'Jumbled Up' Vision

[Bellalily]

My dad who's 83 has just been diagnosed with MD - I think it must be the dry version as the optician has told him there's no treatment (he lives 260 miles from me so I have only spoken to him on the phone about this). He says his vision in one eye is 'jumbled up' so that he can't use the eye at all (other eye is ok at moment but he's been told he has MD in both). His description of his vision loss doesn't sound similar to the usual explanations of MD which describe central vision loss. Has anyone else had a similar experience ? Also, is it possible for him to train his eye to make sense of the jumbled objects he is seeing? (I have read something about Eccentric Eye Training). ?

[Hidden]

Hi Bellalily

So sorry to hear about your dad's eye problem.

First of all, opticians are not infallible. I was diagnosed with dry AMD in both eyes in July 2016 by my optician and was told I did not need treatment "yet" and was not referred to an eye clinic. Because I felt uneasy about it I went to my GP and asked for a referral. By September 2016 the clinic diagnosed wet AMD in my L eye with massive swelling of the macula. So, whether the optician missed the wet AMD or whether it progressed very suddenly I shall never know. I suggest he asks his GP for a referral.

You say that your dad describes his vision in that eye as jumbled up. Does he mean distortions? They can be very severe and disorientating so that the eye becomes useless to the point that even the good eye cannot compensate sufficiently so that everything he looks at looks shapeless. I has happened to me recently. Massive distortions (not just wavy lines) are usually, though not always, a sign of fluid build-up in the retina and should be treated.

Sometimes, when there is severe loss of vision, but usually in both eyes, people see things that are not really there when the brain tries to fill in by memory what the eye cannot see. This is called Charles Bonnet Syndrome. Don't worry, it has absolutely nothing to do with dementia or his mental state. But I would advise him strongly to see an ophthalmologist. If your GP does not refer him he should just go to A&E. It really needs checking out.

As for eye exercises, well, I doubt that it will do much good at this stage. The clinic will advise him if such action would be beneficial to him.

Hope he gets himself sorted. I wish you both the very best.

[Bellalily in reply to Hidden]

Thanks so much Ayayay for that very comprehensive reply - I will advise dad to go to gp asap and get a referral.🙂

[Hidden in reply to Bellalily]

I agree with wheezyl. I should have added that if the jumbled vision had come on suddenly to go straight to A&E

[Hidden]

Rather than waiting for a GP appointment, your dad could attend his nearest Eye casualty. This can save valuable time.

[Bellalily in reply to Hidden]

ok thank you I will let him know

[marianS]

Dear Bellalily,

It must be difficult for your dad trying to adjust to his sight changes, and for you as you try to support from a distance.

It sounds like your dad needs a clearer assessment on the impact of his sight on daily living. He could have a free home assessment from someone in the local Sensory team to see if there are any practical needs they can help with, but if he needs a magnifier, he would need to be referred to the Hospital Low Vision Aids department (request this from his GP).

If you let us know your Dad's location we could signpost you to the local Sensory team, usually linked to his council or Adult services.

You may find some information on our website helpful for you to read. I suggest the following:

About Dry AMD:

macularsociety.org/sites/de...

macularsociety.org/sites/de...

Daily Living Skills

macularsociety.org/sites/de...

Low Vision Aids

macularsociety.org/sites/de...

Emotional Impact of sight loss

macularsociety.org/sites/de...

Eccentric viewing is a skill that can be learned to make the most of residual “peripheral vision” and you can read about this here:

macularsociety.org/sites/de...

If either you or your father could ring our Helpline we could put you through to the department that can tell you more about this, and possibly put him on a waiting list for a trainer.

It may also be helpful to forewarn you that sometimes people with deteriorating vision can experience visual hallucinations (also called Charles Bonnet Syndrome) and you can read about this here.

macularsociety.org/sites/de...

If this happens, at least you will be prepared. Again, help is available in the form of telephone counselling as long as he does not suffer from deafness or dementia.

Just to make you aware, we are currently offering free 6 month membership. This is a good way to keep up with current developments and you can join by following this link:

macularsociety.org/6months

Please do not hesitate to contact us if you want to discuss any of the above matters further, or we can be of any future help, either by email or ringing the Macular Society Helpline which is open 9am – 5pm Monday to Friday on 0300 3030 111.

Kind regards,

From the Macular Society Helpline

[Bellalily]

Thank you all very much for the replies - he is now saying that vision is only jumbled when he reads text so it's not as bad as I originally thought! However, It's really useful to have all your replies should he need further help and information.

[Hidden]

Hi bellalily, not to worry you but just because it's jumbled " only reading text" doesn't mean it's not potentially worse than you thought. Permanent damage can occur if things are left too long untreated ( assuming it's a treatable cause). Best be on the safe side and get him checked at a hospital asap.