My Partner has Meniere's & Nystagmus but had DLA turned down

DavidF

sh1305 wrote: »

Ask to be referred to the local eye hospital. Within the eye hospital, there's a low vision clinic. They can give your girlfriend magnifiers to help with reading. There are electronic (CCTV) magnifiers you can get too. The low vision clinic can't give you these - they can only give basic ones. I've personally found these to be useless.

Opticians can't do anything as such. They can give her stronger glasses if needed; but they can't register her as partially sighted. The eye hsopital can do this, if they believe her vision is severe enough for it. The opticians can refer her to the eye hospital.

I do get the neck pains too. I have been told it's because of how I hold my head.

I've been "given up" on too because there's nothing they can do. There is currently no treatment for Nystagmus.

She basically gave up talking to her GP about it since he told her that it was incurable and that basically there was nothing he/they could do for her - I will now get her to chase this up and ask to be referred to the "Eye Hospital".
As for the neck pain/stiff neck well TBH the masseuse that I take her to is one I found when I had sciatic nerve problems - The doc was giving me like mega powerfull painkillers and told me to expect the worst.....got told by a friend about this bloke, Went to see him and within 4 half hour sessions my trapped sciatic nerve was "cured" I do not feel it at all now...Well I persuaded my partner to go see him too - (Took a good bit of persuading lol) And to her great relief he has alleviated the "stiff" neck. He recommends something like 1 session every 6-8 weeks just to "maintain" the situation....but she feels much more comfortable now after having had 6 sessions in the last 5 weeks. Before this she literally could not move her head from side to side and she was getting approx 1 hour sleep per night. (According to my partner her neck would go into this sort of state once or twice per year and could last for 2 months plus) so going to this massage therapist has definitely helped.

greenoo000 wrote: »

Have you tried the site MDUK, it's the UK forum for menieres suffers and there will be lots of advice there.

I have had menieres for years, but recently have had long periods of 'normality' - has your partner tried gentamicin treatment - I'm sure that's what worked for me.

Anyway goodluck

Right that's another site in my bookmarks - Thanks for that and I will also read up on the treatment that you have referred to

Molly41 wrote: »

Try www.dizzytimes.com

Perhaps get help applying for DLA from Community Law Centre/ Welfare Rights/ CAB. There is also a good website called benefitsandwork.co.uk that give some good advice on filling in DLA forms although there is a one off payment to access info.

Another website for the bookmark. Thanks again.
I will be helping her to chase up a re-application for DLA - the last time she applied was 18 months ago.....before we were together, I am determined to help her get whatever she is entitled to as well as get her referred to as much physical "help" as she can. Im pretty sure she should not have to go through life in the states that she sometimes finds herself in.

Thanks again for all the replies.

LondonDiva

What additional costs does she have as aresult of her illness?

DavidF

Oldernotwiser wrote: »

Has she declared your earnings on her IS claim?

We have only recently moved in together - I am in the middle of helping her transfer/sort out everything benefit related - I have NO Problem repaying ANY overpayment - I just want/need to know what she is/is not entitled to - BTW I must point out I am not just after £££ I am much more interested in what I can do to help her situation - This would include DLA as im sure people could appreciate if she had more "help" then she could pay for all the extra stuff that she "may" need.
To my mind this would be taxi's, Carer ?, (although I would be doing most of that she still likes to feel independent), Any other privately funded treatments that she could part fund with her DLA......Like I have already mentioned I am more than happy to pay out whatever it takes - But alas I am not a millionaire and as such my finances are not infinite.

DavidF

LondonDiva wrote: »

What additional costs does she have as aresult of her illness?

I have mostly answered this in the post below yours.

Indie_Kid

McKneff wrote: »

Cant help with the condition at all sorry, but have you thought of applying for a bus pass, the council should be approached and as she cant travel on her own they may give her one with a C for companion on it. So that anyone travelling with her get free travel also.
My OH got one of these because he is blind in one eye and has no peripheral vision in the other.
I know it depends on the criteria of the council you are under but maybe worth a try.

have you tried going through the appeal process.

She doesn't need to be registered as partially sigted for this. Many people with Nystagmus ("Nystagmites") can read the amount of letters on he eye chart (middle of 6th line) but the constant changing of the condition plus tiredness does make it much harder to drve.

Mr_Falling_Star

Thanks for this chance to be ultrageeky! Alan Shepard, the first American in space, developed Menieres Disease afer his spaceflight in 1961. Obviously it barred him from any future flights. He had pionerring surgery where a small silicon tube was inserted in his eardrum to drain any excess liquid. It seemed to work and he went on to fly command the Apollo 14 mission to the moon.

http://en.wikipedia.org/wiki/Alan_Shepard

I'll get my coat

f1widow

I posted something similar about help with filling in my DLA form - I dont suffer with your girlfriends problem but i was given an organisation called DIAL which I have book marked and will look at more closely but think just quickly looking they are a disability help organisation covering disabilities - dont know whether they can help at all

I sympathise with your and her problems - I would like my DLA to pay for treatments - unfortunately due to cutbacks I can only get help if my illness is at a very severe level (am wondering how never leaving the house, cant take son to school dont have a normal home life etc is not severe but hey ho.....) so totally see why you want the DLA

Hope that you get some help soon - and try looking up DIAL

Oldernotwiser

DavidF wrote: »

We have only recently moved in together - I am in the middle of helping her transfer/sort out everything benefit related - I have NO Problem repaying ANY overpayment - I just want/need to know what she is/is not entitled to - BTW I must point out I am not just after £££ I am much more interested in what I can do to help her situation - This would include DLA as im sure people could appreciate if she had more "help" then she could pay for all the extra stuff that she "may" need.
To my mind this would be taxi's, Carer ?, (although I would be doing most of that she still likes to feel independent), Any other privately funded treatments that she could part fund with her DLA......Like I have already mentioned I am more than happy to pay out whatever it takes - But alas I am not a millionaire and as such my finances are not infinite.

DLA isn't means tested but IS is. Whilst you help her to get her DLA sorted out she must declare your income for her IS or she can be considered to be claiming fraudulently which could have more consequences than paying back any overpayments. This would also apply if she's claiming HB/LHA/CTB.

I appreciate that benefits are complicated and it's great that you are helping her but you need to tackle these issues as well as DLA. It's a sharp learning curve I'm afraid.

sunnyone

velvetybubbles wrote: »

my son was born with nystagmus
he is a stylist!
eye sight is ok

My FIL was registed blind due to nystagmus yet his son (my husband) was able to do anthing he wants, thats the range of nystagmus that Ive come into contact with and no doubt the full range is even wider.

No one can say that a eye condition is negliable without understanding the full range of the symptoms and disability that they can cause, it ignorance to post the quote the above post.

wobbly eyes can be nothing but add in the full range of nystagmus symptons and life can be very difficult.

McKneff

I just wanted to leave something worth while.

You clearly love this lady very much,

Your posts have, at times, moved me to tears, although this lady has her problems she is very, very fortunate to have someone love and care for her as much as you do. I always say if life takes away one thing it always compensates you with another. You are 'it'
I really do wish you both the very best.
x
Annie.