I'm going blind. Reassure me . . . ?

[RedPandaFluff]

I have Usher Syndrome (Type 2) and this means I'm losing my hearing, and I have retinitis pigmentosa, so I'm gradually losing my peripheral vision (and my night vision is already really bad).

I now have to be assessed for my driving licence every year (it used to be every two years, previously three) so I know it's deteriorating and I don't think I'm going to be allowed to keep my licence when it's next up for renewal in April.

I'm terrified at the thought of losing my sight AND my hearing. So I'm desperately trying to find positives, or at least, support and things I can do to help the situation.

Should I, for example, be assessed and possibly register as legally blind? Is there any benefit to doing this?

This must be a devastating diagnosis, I'm not sure you'll get much support on here as Usher syndrome isn't very common. Maybe try a specific site or forum for people with the same diagnosis?

Fwiw I know 2 people with Usher syndrome. Both live full, active rewarding lives. Support is out there, RNID (used to be Action On Hearing Loss now back to RNID) should have some advice as a starting point. Good luck.

If you are only just at the point of losing your licence you may not be able to register as legally blind yet. But my understanding is that there are definitely advantages to doing so.

My DH has lost his licence from sight loss and there are definite advantages to engaging with services for those with low vision - there is masses out there, both high and low tech. He isn't keen and I have to push him a bit but we have adapted all the lighting in our house, if we go out to a museum we'll be asking for the large text (and complaining if there isn't any), his computer keyboard is a thing of beauty and so on.

So it is definitely worth checking out sources of support sooner rather than later. Even just knowing what is there can be reassuring. Some of the tech is mind blowing.

Hi OP your consultant would need to complete a certificate confirming that you are either sight impaired or severely sight impaired (legally blind). If you are SSI you are eligible for a tax allowance, blue badge etc.Your local authority should have a sensory disability team that should be able to provide some advice and support. RNIB and Retina UK also really helpful and have peer support groups. It is really tough but there is help out there. Take care x

Hi had some further thoughts based on my own experience. Is there an eye clinic liaison officer (ECLO) attached to the service that you are cared for now or got diagnosed by? They are a great source of advice and signposting onto various types of support e.g adaptive technology. In answer to your question is it worth getting assessed as sight impaired- yes I think it is as it makes access to advice and support easier. I hated having to surrender my driving license but am used to it now and have learned to adapt. Be prepared though, the letter from the DVLA requiring you to send your license back is rather snotty!

Thank you so much for your responses. I feel like I want to DO things, to prepare, to understand what I should do when the time comes etc. Maybe to feel like I have a small element of control? Not sure.

Yeah, I think that will be a difficult letter to read, @Pedestriancrossing . . .

I think for DH it helped that he had given up driving a couple of years before the letter arrived, and he really was surprised when he passed the previous time.

Also when you get told to stop driving in the dark that is incredibly restrictive, especially in the winter - DH basically gave up then, so he didn't have much to give up when the snotty letter arrived. He was still really hurt though.

Something to think about is doing things that involve vision sooner rather than later - DH is keen to pack in the holidays, museums, art galleries and so on.

(((HUG)))

No advice, sorry, but lots of love,

A old friend was told he'd lose his sight & hearing & he tried to hear & see everything he could, tried to remember his kids voices etc. 15 years later he still has both to a great degree, he regrets the amount of time he spent terrified. But I don't know how you'd go about not stressing & wanting to do it all.

Lots of strength & love

@AnnaMagnani I already avoid driving in the dark when I can, my night vision is already shot - driving on roads with streetlights or cats eyes is fine but manoevering in dimly lit areas is a nightmare. I've bumped into bins and bollards 

@JugglingJanuary I'm trying to strike a balance between absorbing everything I can right now, and not project too far into the future because it might be a really gradual deterioration.

I think it's just the prospect of losing sight AND hearing. It's going to be very isolating. And hard for DH and DD too.

Thank you for replying, by the way - it means a lot.

If you will definitely lose your vision then I would recommend you start learning braille and screen reader type technology now. Adaptive technology will help at all stages from using magnifying tools and different contrasts and colours to moving to a text to type tool and text to voice when you are no longer able to read and write.

I am classed as severely visually impaired in one eye and keep basically on top of the accessibility tools that are free on all devices just to keep aware as know I will one day need them.

RNIB have loads of useful resources and support www.rnib.org.uk/

No advice but so sorry to hear you are facing this

@RedPandaFluff.

I've been thinking about you all day.

(I realised I hadn't said my friend was told he'd lose both within 5 years.)

I think you're doing really well & being really strong. I hope you can find a way you can receive communication. I imagine there are a lot of tech options.

I read on here about an MNers little boy who was born blind & deaf. They had to learn from him, but obviously could only communicate about what he could 'ask for' & they could understand. Each thing was a huge celebration. Obviously so different for you as you have 'knowledge', language, writing etc.

I wish I had more to give you, but you're already stronger than me.

Always here if you need to scream, shout, & rant about how unfair life is xx