Possible hope for mum?!

[Jacqui100]

Hi everyone

I am writing on behalf if my mum who has dry AMD in both eyes. She is 81 and has lived with this for about 6 years. Like other people have said, it was missed and came as a complete shock when she was told and woese that there was not a lot of help, no cure. It was a kind of live with it, get on with your lfe!. We as a family try and help as much as possible with life, she has my dad who is 82. Mum takes Macushields too.

I have been investigating a Dr Quereshi doing pioneering work in london for people with amd. Based on the hubble telescope. Has anyone heard of this guy, anyone had the op he is offering? Yes, its very expensive but we would do this if it helped mums eyesight. Any info would be great.

Are there any gadgets she can tap into? She cant read papers, letters, do crosswords, uts very sad.

[kalahuchi]

It sounds so miserable for your poor mom and so lovely that you are trying to pull out all the stops to help her.

Personally I would ring the Macular Society for advice; they really are fantastic and I can't speak highly enough of them.

Has your mom been referred to a specialist; if not that would be your first port of call because you really need advice from someone who has seen your mom's eyes (my understanding is that the "telescope" operation isn't suitable for everyone) and your mom's GP might be able to set things in motion for her. Even if nothing can be done it may help if you can get a better understanding of exactly what is wrong with your mom's eyes and why there is no treatment that can be offered; again, I would think your GP may be the best person to approach.

On a practical level, there are many, many aids and gadgets that can make life much easier for those of us with poor eyesight. Again, the Macular Society will point you in the right direction but these low tech solutions like good lighting, magnifiers etc have much more impact than you might think. I was quite shocked when I went to my local Low Vision Centre and saw all of the goodies that they had. I was getting quite despondent but after trying a few out I am now able to read and sew more easily.

Good luck x

[Jacqui100 in reply to kalahuchi]

Thanks for your reply Kalahuchi, much appreciated. Yes mum has been referred and has suggested she have a cataract removed in her one eye, it could let more light in and help her see peripherally a little better. So we are waiting for this. I will call the macular society too. The RNIB have also been helpful with a few ideas around the home too.

Thanks

[Rosalyn-helpline Partner]

Dear Jacqui100,

Please do ring us on the Macular Society helpline.

I assume that as your mother has dry AMD, she does not have an NHS ophthalmologist. However, if she is considering the lens implants referenced above, it may be worth requesting a referral to a retinal specialist via the GP and seeking their opinion as to whether the implant may potentially of any benefit, as Kalahuchi also suggests.

As it is important that you seek the opinion of a retinal specialist, it is worth checking that the ophthalmologist that your mother has been referred to for her cataracts is also a retinal specialist. If you do call us on the helpline, we may be able to check this for you.

We do have a lens implant information sheet which we could send out to you.

Just to make you aware, we are currently offering free 6 month membership. This is a good way to keep up with current developments. Please ring us if you would like to benefit from this, or join via the following link:

macularsociety.org/6months

Our helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Kind regards,