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Mum rapidly losing eyesight through Macular Degeneration

(17 Posts)
Ksing Mon 02-Mar-20 07:22:21

Good Morning! Feeling very upset for my poor Mum whose eyesight has failed through Macular Degeneration! She has deteriorated to a degree now where she can’t see photos, etc and has had to give up her Book Club!

Can anyone who suffers from this terrible condition perhaps give me some advice as to how I can help her?

Thank you so much!

computor Mon 02-Mar-20 11:21:56

my husband has macular degeneration ,contact R .N.I B ,who will be able to tell you the best way forward for your Mum..

midgey Mon 02-Mar-20 11:48:40

Could she listen to the books under discussion on line? There are several sites that ‘read’ books aloud.

BlueBelle Mon 02-Mar-20 11:59:58

There are two types of macular degeneration wet and dry and it depends which your mum has as to what can be done All this should be discussed with the eye consultant at the hospital where presumably your mum has been referred
If mum has wet Macular she may be offered injections (monthly) they sound horrid but my Dad had them for a few years before he died which kept him some sight, enough to still watch tv and read short amounts of text and see his family
Dry doesn’t have so much going for it unless things have changed in the last 8 years
There are many things you can get for her in the meantime watches that talk the time, talking books, magnifying screens for a TV RNBI has all these on sale and extra strong magnifiers too
Do talk to her consultant though she really should have been given all this information and if she is declared partially sighted she can get some benefits Dad had a small allowance for taxis as he couldn’t use his bus pass it only covered a few taxis a year but ever bit helps

bingo12 Mon 02-Mar-20 13:33:06

Is she taking Macushield? Supposed to stop further degeneration.

Jessity Mon 02-Mar-20 13:42:40

My husband has Macular Degeneration in both eyes. Bluebelle has good advice. Our hospital eye clinic has a low vision department which can offer good advice and equipment such as strong magnifiers. They should be able to refer you to the sensory deprivation team for the area who can send someone with help and advice on general day to day living.

RNIB talking books are good, Calibre offer the same, the two together should give your mother ample reading matter. My husband uses a Sonic reader for the memory sticks that hold the books. RNIB offer them as does Amazon.

It seems overwhelming at first, but there is lots of help out there.

janeainsworth Mon 02-Mar-20 13:48:56

Ksing my DMiL had macular degeneration, dry in one eye and wet in the other. She had got to the stage of being unable to read.

This must have been at least 15 years ago. The lucentis injections had only just been approved but she was referred to Addenbrookes in Cambridge. She was warned that all the injections would do was stop her condition getting any worse, but in fact her vision improved & to her delight she could read again.
She was dreading the injections but said in fact she could barely feel anything - I think they put local anaesthetic in first.

So do encourage your mother to go for it and fight for a referral if you have to.

Hope that helps.

Baggs Mon 02-Mar-20 13:49:52

There is also a Macular Society:

My mum found it very helpful.

Willow500 Mon 02-Mar-20 13:56:36

My MIL, who passed away 10 years ago, lost her sight a few years before to wet MD and still managed to live a very fulfilling life afterwards. She continued to cook and garden and enjoyed Talking Books and magazines. There were several things which helped her and technology has moved on a lot since those days so I'm sure there are more now. I agree talk to the RNIB to find out what is available.

She had small red rubber dots which FIL fastened to the microwave dial, her tape player, her mobile phone speed dial number and other items she could identify. She did have a computer and a special keyboard with yellow characters on it which she could make out better than black on white plus the screen was set to help although she'd come to tech too late in life to really make use of that. There was a small gadget which went on the side of a cup so she knew when it was full.

Losing your sight is one of the most devastating experiences and nothing can really prepare you for it so putting as many things in place to help your mum will be of great value for her quality of life.

Charleygirl5 Mon 02-Mar-20 14:03:49

bingo12 that is not strictly true- it is only eye injections like Lucentis which arrests the development of wet macular. At present there is nothing for dry but there are some exciting things on the pipeline but like most trials they take many years.

If your mother goes to the low vision clinic at her local hospital she should not have to pay for magnifiers etc.

There should also be a local Macular Society group close to where she lives- that can be very helpful and keep her up to date with trials etc.

GrannySomerset Mon 02-Mar-20 14:05:42

My sympathy to your Mum, Ksing but there is some very helpful advice here. I started taking Macushield some twelve years ago when early dry MD was spotted. It has got no worse so I attribute it to the pills - bought 3 for 2 at Boots it costs me less than £150 per year so cheap at the price! I know that Macushield is not officially recommended but there does seem to be quite a lot of anecdotal evidence that it works.

Ksing Mon 02-Mar-20 14:23:45

Good Afternoon everyone, may I say a grateful Thank you to everyone who has replied to me! Lots of interesting information, will get straight on to looking into everything!

😊 Thank you so much!

Charleygirl5 Mon 02-Mar-20 14:34:28

It costs £18 a year to be a member of the Macular Society and one receives I think 4 magazines a year. There is a free helpline for members who want practical and/or emotional help. It is a disease which affects people in different ways. I know a fellow who 4 years ago was driving around England as part of his job but now he walks with the use of a white stick. He has dry Macular in both eyes.

Not smoking, losing weight if overweight, eating a healthy diet rich in kale and fish all helps. Also taking ADCAL D3 tablets. Some GPs will prescribe this drug but it can be bought over the counter.

BBbevan Mon 02-Mar-20 17:34:04

This is probably too late for your Mum Ksing but may be of help to others. My DH’s grandmother and father both had AMD and were practically blind when they died. DH’s optician also treated his dad so knowing the family history recommended ICaps or similar with the AREDs formula. Also dark red juice and lots of green leafy vegetables. That was many years ago and DH has no sign of AMD. Also No Smoking .

V3ra Mon 02-Mar-20 18:19:03

My mother in law (92) was widowed many years ago and lost her eyesight to Macular Degeneration a few months later. She manages amazingly well.

She has an enormous TV and a flatbed scanner linked to it. She uses this to read the TV magazine or her post.

She has a person at the bank she goes to see to discuss her finances, plus my husband and his siblings are all joint signatories on her current account.

She's fortunate in that the bus stop is at the end of her garden so she can get into town. She came back once having found a new, really cheap, cafe where she was made most welcome. Turned out it was a soup kitchen for down and outs!

Her local Tesco superstore runs a courtesy pick-up bus round the villages so she can do her own shopping if she wants to. She asks at Customer Services and a member of staff takes her and her list round the store.

She has a couple of friends who still drive so they'll all go for a pub lunch and she'll pay for the driver's meal.

She's always kept a very positive attitude as she knew when it happened she would need help, and no-one would want to come if she complained.

We take her on holiday every year: she hadn't flown before she lost her sight but she's been all over since including several Caribbean cruises.
She goes on coach holidays with her friends, they like the "Turkey and Tinsel" weekends.

She needs her food cutting up and any bones removing before it's safe to eat. Either we do this or the staff will. She did try meals on wheels for a while.

There's lots of help available if you ask, and accept it.

My husband's currently considering getting her a Google Nest or Alexa to help her with the radio and general information.

Hope this helps, best wishes to your mum x

Jessity Mon 02-Mar-20 18:59:22

BBbevan when my husband’s first eye developed macular degeneration, he was told about Icaps and similar, and took them. Almost every main meal from then included broccoli or spinach or both. He didn’t smoke. But 15 years later the other eye succumbed.

I like to think the regime helped to keep it at bay for those intervening years and would therefore recommend it as you have.

I cannot face broccoli now though! 🙂

Gymstagran Mon 02-Mar-20 19:20:22

I too would recommend contacting the Macular Society. There is currently six months free membership. There most likely will be a support group in your area where chatting to others with the condition does help.
The counselling service provided is by telephone and there are telephone buddies who agree to ring and chat once a week.

The hospital she attends may have an eye clinic liaison officer who can give information about support in her area.

Also social services should have a low vision support team that could assess what support is needed in the home. There are many things that can help ranging from low tech bump ons to magnifiers of varying types.

There has been proven to be a genetic link so care should be taken by family members, frequent eye tests, healthy diets, wear sunglasses.

The AREDS2 formulation for supplements is the one recommended, as it was subjected to a clinical trial.

There is so much research going on at the moment into finding treatments and a cure. All of which is included in the quarterly Macular Society magazine. As V3ra says there is a lot of help available. I hope you find the help your mom needs.