Macular Degeneration, my poor mum!

[FunnysInLaJardin]

just weeks after my housebound Dad received his diagnosis of Altzheimers, my mum who is his main carer has been diagnosed with wet MD. I don't know how they will cope. He is 87 and she is 84. Poor poor old things. Mum will not accept help, but now she must I think.

I don't want to get old!

Oh, Funny's . Have they caught it on time. Can she have the anti-VEGF injections?

I think it is an early diagnosis. She is going to Queens in Nottingham in a week for a full diagnosis so I will know more then. I hope she can have treatment.

Thanks for your reply chip. It just seems like one thing after another at the moment, but I suppose thats what happens when you get old.

If they have caught it early, that is very good. A lot of my patients have had the injections and while they're not a nice thing to think about having, the majority have had an improvement or at least a stabilisation in their vision.
The main thing to remember is that even with wet ARMD you always have navigational vision, so you can get around, although reading and TV where detailed vision is required become more of a problem.
Wait and see what they say at Queens, hopefully it may not be all bad.

Agree with chipmonkey ........... its not great to have at all ( I have macular holes ) but the saving grace is that peripheral vision is not affected so she should still get around.

The help she most probably would need first would be for things like medications as reading kinda gets hard .... maybe large print will be enough depending on how much she is affected . Cooking might also become an issue ...... however once diagnosed you will be able to tell more.

I remember when the trials of the injections first came out ......... ironically I was too young to get on the trials at the time ( i have had this for 35 years , its not usually a young persons condition!!). I hear they can be quite successful at preventing further loss of vision.

My mum has MD and v.little sight .
I posted this list of things that we found helped her on another thread .

The little orange self adhesive bumpits are really good - I've even put one on the TV remote control on a significant button .

Don't despair ,there are lots of ways round things ,you might be surprised how your mum works out ways to cope .

Talking clock -time+date
www.rnib.org.uk/shop/Pages/ProductDetails.aspx?category=talking_clocks&productID=CC5301 one by the bed and one where she sits

Big button phone
www.rnib.org.uk/shop/Pages/ProductDetails.aspx?category=corded_telephones&productID=DH216X0 took her a while to get used to the 3 memory buttons ,she was pressing the label ,not the pad beneath the label

www.rnib.org.uk/shop/Pages/ProductDetails.aspx?category=utensils&productID=DK12701

Orange bump it markers
www.rnib.org.uk/shop/Pages/ProductDetails.aspx?category=tactile_labelling&productID=DL1501 on the cooker and elsewhere

www.amazon.co.uk/Breville-VKJ142-Hot-Cup/dp/B001L5SSGQ
lots of different ones around ,get one where you can adjust amount dispensed and with a lid that it is fairly easy to open .My mum fills hers with a plastic jug .

thick black felt tip pens

an anglepoise lamp with this light bulb www.energybulbs.co.uk/products/Day+Light+Bulbs/Daylight+Spiral+Bulbs/DAYLIGHT+Spiral+Bulbs/BioBulb+SAD+Daylight+Bulb+25W%3D100W+ES+/936376506

bowls and milk jugs with a dark interior glaze so that she can see her porridge and milk

And what really has made a difference is the new style dosset box from chemist ( Boots ,Lloyds ,Day Lewis ) which is a blister pack .
It's for a week and has 4 large cells/blisters for each day - morning ,lunch ,tea and bed .

I have to cut the blister pack up into 7 strips ( one for each day ) and she has one strip each day . Otherwise she was randomly opening blisters from different days .
She opens the first cell with a knife over a dark brown sort of pasta dish and feels the tablets with her fingers .

And get her put on register for blind/partial sight because it's easier then to get a Taxi card ( in London ) and if Soc Services /your local council has a low vision service she might get some stuff free . My mum got the vibrating water level thing ,a talking clock ,etc .

Thanks so much for all of your support and information. I just think my parents now have to be realistic about the amount of help that they will need. No more 'oh I'll be fine' from my mum!

My mum is 92 and as I've said has v.little sight and a lot of other disabling health problems .
She lives alone and it is fortunate that I can visit frequently .
A lot of my efforts are directed in enabling her to carry on living alone ,maintaining a sort of facade that she is coping independently .

That means things like accepting the burns and bruises on her forearms - that I keep a close eye on and dress - the clutter and the cobwebs ,the diet of pork pies and soup .
My cleaning is limited to the essentials and I have to do it as quietly and discretly as I can .

Never underestimate how intrusive it is for independent elderly people trying to maintain independence to have carers ,cleaners ,nurses coming in .

you are right ginger I will have to tread very carefully, but she will need some help not least because she looks after my dad who has Altzheimers and is virtually wheelchair bound, not to mention not entirely continent!

ginger that is a super list! I will take note for my patients, some excellent ideas.

Just to say if it is wet md, it has to be treated within a few days or scar tissue will form and the injections won't work. My mum has wet md in one eye and it was too late to treat (and dry md in the other eye which cant be treated). The consultant at moor fields eye hospital in London said if the other eye 'goes' , go immediately to the moor fields eye accident and emergency section so they can treat it promptly. This is the problem with wet md - hospitals often can't give patients appts within the critical timeframe.

thanks Zak my mum has wet md in one eye and dry in the other. I'll tell her to watch for any changes. Not sure yet if the wet md can be treated but hopefully will find out this week. I know I've said it before, but it's rubbish getting old. And I know mum will be doubly furious as she's really taken care of her physical health!

Yes, we have a "fast track system" here where referrals for wet AMD are supposed to be seen quickly. They weren't I got to the point where I told any patients with fresh wet AMD to go privately. This is Ireland though. Just so wrong.

And it is unfair that someone who takes good care of themselves gets it Funnys. But unfotunately two risk factors are being female and being white. If you're either or both of those there's not much you can do about it!
BTW, is she taking a vitamin supplement specifically for ARMD? It helps prevent tbe dry from changing to wet

chipmonkey could you say more about dry MD changing to wet ?

I think my mum has dry .
We have been remiss about follow up appointments or even optician .
( she has so many things wrong and so many hospital appointments ,all of which are logistically a nightmare )

I think her eyes are worse .

ginge, if blood vessels around the macula start leaking, then your dry ARMD has changed to wet.

If patients take a high dose of lutein and omega 3, this is less likely to happen.

If any of my patients have dry ARMD, I give them an <a class="break-all" href="http://www.google.ie/imgres?imgurl=upload.wikimedia.org/wikipedia/commons/0/01/Normalamslergrid.gif&imgrefurl=en.wikipedia.org/wiki/Amsler_grid&h=202&w=200&sz=29&tbnid=39y8doXHyHwvEM:&tbnh=90&tbnw=89&zoom=1&usg=__sPM4c7IGUVzyKZ6vo3g31badb7k=&sa=X&ei=NUtGUImwKIiw0AWp24HgDg&ved=0CCkQ9QEwAg&dur=1515" rel="nofollow" target="_blank">amsler Grid to take home. The one in that picture is a bit small. I tell them to look at the image with reading specs on, once a week with each eye individually. If they perceive that the lines are wavy, rather than straight, they are to go straight to the opthalmologsy department of the hospital.

If the lines are straight, then its likely that it's still dry ARMD. Also, people with ARMD can also have cataracts so sometimes it's not always the ARMD that's making vision worse.

Thanks chip - you're a star .

Think cataracts might be in the equation .

They usually are! Sometimes getting the cataracts removed can help a little but unless it's going to make a big difference, most surgeons leave well enough alone.