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[Ughb]

hi I’m 51 and have just been diagnosed with advanced glucoma . (I mistakenly thought I just needed glasses 😬My vision fields are sounding quite limited and I am looking for tips to help make life easier and hopefully to feel more confident with basics like walking, working, busy or new places . I would be very grateful for any strategies or tips xx

[Piggy-in-the-middle]

Good lighting for tasks indoors is really helpful. Outside I find sunglasses and/or a brimmed hat cuts out glare. I have a pocket telescope to spot the bus number, also useful to read the board at rail stations. I make sure I wear/carry something with contrast eg light-coloured coat or bag. If your sight is poor enough to warrant CVI (certificate of visual impairment) you may be eligible for a bus pass. Check rnib website for advice and gadgets, good luck!

[Ughb in reply to Piggy-in-the-middle]

Thank you so much! I hadn’t thought of the brimmed hat! (That may help also to protect from all the branches I walk straight into 😂) pocket telescope also a great idea. I may reluctantly consider a stick as can’t spot unevenness of paving or at least to use when eg at national trust places as it’s impossible to spot where a path leads to a step! I’m trying to find walking routes to wirk with the least people as im still finding it unnerving when they keep appearing from nowhere but maybe I should consider public transport. Thank you so kindly, best wishes x

[KieranGlaucomaUK Administrator]

Hi there. You're in the right place and I'm sure many people on here will have some great tips for you. If you haven't called us already please feel free to do so on 01233 648170 or email us at [e-mail]. We are here 9:30-5 Mon-Fri and can talk through your diagnosis with you and also answer other glaucoma related queries that you might have. All the best.

[muddledme]

Hello Ughb,

Next Tuesday there is an excellent speaker on the Glaucoma UK digital webinar. He is a consultant opthalmologist talking about Glaucoma and lifestyle, you should have the opportunity to ask questions.

If you are interested just google Glaucoma UK digital webinar to book a place, I think it is about 7-8 pm on 6 th August.

Best wishes

[Crafty-gran in reply to muddledme]

Hi

I can’t seem to find the information re webinars and sign up

I normally get notified

I find the webinars so informative

[muddledme in reply to Crafty-gran]

Hello Crafty-gran,

If you google Glaucoma UK digital webinars then choose our events/getting involved ...you should find any webinars where you can register.

I just did this this morning to check that it is still the same. Occaisionally the webinars are also listed on this forum on the right hand side....wish they were always there to remind me ! Also Glaucoma UK usually remind you by e mail the day before the webinar is due ...really usefull.

Best wishes

[Crafty-gran in reply to muddledme]

Thank you

I’ll look now

[muddledme]

Did your optometrist mention that any first degree relative may have added risk of glaucoma ? Both my late Mum and my sister have had glaucoma. Any of your close relatives would be eligible for a free annual eye test.

There are at least 300,000 undiagnosed people in the country with this disease, which of course is so much easier to treat if discovered before symptoms develop.

[Ughb in reply to muddledme]

Hello there, my consultant gave emphasis to immediately informing my brother. I googled it and not sure how accurate but found siblings 8 x more chance and my children x 2. Getting my kids booked in asap. (I’m hoping I can just give my hospital letter re free of charge for them?) I have paid the £25-£30 twice in last 2 months (2nd time to just check my pressures and the first time the optician claimed it but yet I still paid?? Also I have to pay every time as it’s only funded every 2 years?? Which of course I will do as can’t risk waiting for hospital appts in case pressures high and more damage done in the interim. Annoying tho as so many people told me the tests would be free which in actuality they are not 🙄…. Cont ..actually I’m not sure , but the above may not have been the case if I had not swapped to a different optician on second test (I had swapped to them to take advantage of purchase of cheaper deal on the glasses)

[muddledme in reply to Ughb]

Glad you were told about the genetic risk.

If you have your eyes tested at one optician you do not have to buy glasses there...but can take the prescription to any other optician.

Once you are diagnosed with glaucoma, or are a close relative then you should be entitled to a free eye test annually. Extra eye pressure tests between yearly tests may be charged by the optician. In some counties (Somerset is one ) there is an excellent scheme where certain opticians will see you for urgent problems free of charge. Your local eye dept at the hospital should know. In Somerset it is called A.C.E.S scheme.

One thing I found very helpful was using different coloured tape to mark the tops of the different eye drops. There are several webinars on the glaucoma uk website about how people live with glaucoma, how to instill drops etc etc ....I have found them very usefull.

Best wishes

[Ughb in reply to muddledme]

Thank you so much for all the info! My optician told me I was entitled to the free test 2 yearly but I will double check re annually . Yes differentiating the eye drops (I pop one of each into my pyj pocket so I don’t double dose on one by accident) but I appreciate this is a rather slap dash system ! Unfortunately re taking my prescription to a different optician to purchase the glasses, it now turns out the original prescription was not accurate . So I now will be spending more to change the lenses with the add ins etc, than if I stuck with my first optician 🙄will try to learn from that! thank you for your advice, Sonerset sounds more geared up (unlike bucks) will check the webinars too , the very best kf wishes to you x

[Longwalks3]

If you have had your driving licence withdrawn by dvla you are entitled to a free bus pass from your local authority. Mine also allows me travel on West Midlands trains at nocost which is brilliant.

[ODTAA in reply to Longwalks3]

It's worth noting that hospital test for eye pressures are different to optician's test, and are more accurate. I would expect your hospital consultant to check your eyes more often than yearly unless the pressures are well under control and your eyes are stable. I assume you are under the care of a hospital consultant. If not in the hospital system, get your GP to refer ypu urgently. If you have a driving licence, don't forget to notify DVLA and your car insurer of your glaucoma condition, as otherwise, you will be committing an offence, and your insurance will be void. Best wishes.

[Ughb in reply to ODTAA]

Thank you for your advice . I am under consultant from June but she said she wouldn’t see me until after September and suggested I had my pressures checked at optician in between. Had both eyes 32 at optician and then 2 1/2 weeks later 44 46 at my first hospital appt (after taking a pill they dropped to 32 ) Thank fully since drops now around 10 11. I’m calming down a bit now but still feel quite anxious about causing further damage. But I know also there are fluctuations so I probably just hit a spike when being checked. Yes thank you as I will add to my list to actually ask my consultant how regularly I will be checked (should have thought of that!) thank you kindly and the best of wishes

[Beecalmed]

Hi! Free eye checks annually at any optician if you have glaucoma. Same for any close family member I thought. If you have extra pressure checks inbetween the optician will charge you.

Is your diagnosis in both eyes? Have you been advised to inform DVLA? If you have a diagnosis in both eyes and you haven’t been advised then check with hospital but if in both eyes you must inform DVLA as your insurance is invalid if you don’t.