Age Related Macular Degeneration

Glenfinnan unfortunately it is a legal requirement to inform the DVLA of his diagnosis.

If he joins the Macular Society he will receive a quarterly magazine and it keeps us up to date with the latest research.

You do not need to be a member to join a local support group.

Many thanks to all of you got your kind comments. It’s been such a shock as symptoms came out of the blue. I will contact The Macular Society and also the RNIB for help.

You can ring the Macular Society for Support on 0300 3030 111. Check them out on their website. They have monthly zoom information sessions which are recorded and available on their website. There may also be a support group in your area. They will let you know where is the nearest. Try to find out if there is an Eye Clinic Liaison Officer at the hospital. They are there to signpost you to available local services. Your council will have a sight support team and the hospital will have a low vision clinic
Both of these will be able to recommend low vision aids, such as magnifiers and bump ons. There are numerous aids available which will help with daily living. Tips, such as putting an elastic band round the shampoo bottle so it doesn't get mixed up with condition or shower gel or advice on talking reading specs. There is a lot of help out there when you know where to find it. I volunteered with the Society for 15 years and the best thing was being able to point people to where help was available.

A friend of mine bought a small pair of binoculars to help her watch TV and it is excellent for her. Like me, she has bought a large slimline TV so is not sitting too close to it as she did with her previous one.

I do have problems getting a key to fit in a door but I get there in the end.

I bought a small foldable magnifier from Amazon for a fiver because I could not read the tins and packs in a supermarket. It has been a boon.

A friend of mine has an iPhone and it "reads" the items for her. My phone is Android so no joy.

My mother-in-law has had macular degeneration for many years, she's 94 and lives alone.
Until recently she could get about and go into town on the bus. It's physical frailty that's put a stop to that though.

She can't recognise faces as the centre vision has gone.
She can't distinguish colours very easily.

She had a lot of gadgets through the RNIB and the local blind society to help her cope.
Orange buttons on the microwave for example so she can turn it to 1 or 5 minutes, orange buttons on the washing machine dial at the right programme.
A device to hang over the edge of a cup so she doesn't overfill it.
A hot water dispenser that she just puts a cup underneath to make a drink.
Lots in their catalogues to help your husband retain his independence.

My husband has organised a large-buttoned mobile phone for his mum with just a few pre-programmed numbers.
Most recently he bought her a Google Nest device (like Alexa) so that she can ask it for example to play the radio, what time it is, what the weather is outside.
She has a huge television screen and a flatbed scanner linked to it so she can read letters or the TV guide.

I bought her a 10x magnifying mirror as she still likes to wear makeup.

Best wishes to your husband and you Glenfinnan as he adjusts to this diagnosis.

Glenfinnan I have dry AMD in both eyes and I have just finished a clinical trial locally and the drug, an injection, has worked. The eye receiving the injection will not improve but it will not deteriorate anymore. The drug is being assessed by NICE etc. so hopefully within 18 months it will be available. Feel free to PM me.

Husband’s aunt and uncle had the injections and they worked for both of them. They are not one offs though. Uncle had them a few times but it meant he was able to drive and keep his independence. FiL’s sight was too far gone so he couldn’t have them.
I know it sounds daunting but I think it sounds worse than it is.

www.macularsociety.org/

are brilliant. My mother had whichever AMD was not treatable, and she had great help and information from them.

My Mum had wet macular in both eyes. Diagnosis too late to save the sight in one eye but she had injections in the other which seemed to halt the sight loss.

She was in her 90s so I can't tell you what the long term outcome would have been I'm afraid

Look up RNIB site. They have good information. The hospital he is attending may have a volunteer that can speak to you both - the volunteer Mum and I spoke to was from RNIB and had a guide dog herself. My Mum has this condition - now no longer getting injections and she is now registered blind. She has aids from RNIB and gets audiobooks from their library - she was a great reader and now cannot read books. She also receives news USBs for Edinburgh Evening News and Scots Magazine from Lothian Sound - they have volunteer readers and are brilliant so there may be similar in your area. RNIB have lots of aids you can buy as well - there is a catalogue paper and online.

I think charleygirl might know about this.

Have you thought of contacting RNIB?