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My Partner has Meniere's & Nystagmus but had DLA turned down
DavidF
Posts: 498 Forumite
As per title really. She has been diagnosed with both the above conditions -Nystagmus and Menieres Disease.
She can't go out on her own in-case she falls over ect. She can't travel on public transport on her own as she cant focus her eyes well enough to see timetables and destination signs ect. Her hearing is pretty poor with Tinnitus as well as the associated Menieres Disease -
Trouble is she has only been partially diagnosed for the Menieres due to the fact that some of the tests cannot be carried out properly due to the Nystagmus.
She also suffers from depression but we work together on that and I don't let her get to down (She suffered more from this before we were together - I think I may have helped a bit hopefully)
She does get IS but nothing else. She basically needs someone with her at most times. NOT because she can't do stuff alone but as a safety net incase she takes a dizzy spell or whatever. She can and does "struggle on" but it can be and is pretty hard going for her. I personally think she should get DA and I think she should also get awarded a carer's allowance.
Has anyone with these conditions got any experience of claiming any benefits that I have mentioned ?
Also just as important to both of us - does anyone out there have any info and/or help about these conditions ? At the moment she basically just gets through life as best she can but it does seem like a struggle -when she is at her worst she is basically bedridden - I have been taking her to a medical massage therapist and this has helped with the associated bad neck ect - before this she would get frequent neck lock ups where she basically could not turn her head left or right and again at its worst could be totally debilatating and have atually witnessed her crying in pain from this - but like i said the medical massage therapist has helped a lot with this but it does cost - £25 per half hour treatment - but I would go without food if it meant alleviating her pain.
We are not at that stage yet lol - But i am just asking for help or her behalf and any tips on coping or what specialists she could see that could be helpful - I don't mind paying if it will hep her. The GP basically has said its all untreatable and has as such washed his hands of her - Not literally but just that he said he cannot help with her main ailments but he is there for anything else.
Any help would be appreciated.
She can't go out on her own in-case she falls over ect. She can't travel on public transport on her own as she cant focus her eyes well enough to see timetables and destination signs ect. Her hearing is pretty poor with Tinnitus as well as the associated Menieres Disease -
Trouble is she has only been partially diagnosed for the Menieres due to the fact that some of the tests cannot be carried out properly due to the Nystagmus.
She also suffers from depression but we work together on that and I don't let her get to down (She suffered more from this before we were together - I think I may have helped a bit hopefully)
She does get IS but nothing else. She basically needs someone with her at most times. NOT because she can't do stuff alone but as a safety net incase she takes a dizzy spell or whatever. She can and does "struggle on" but it can be and is pretty hard going for her. I personally think she should get DA and I think she should also get awarded a carer's allowance.
Has anyone with these conditions got any experience of claiming any benefits that I have mentioned ?
Also just as important to both of us - does anyone out there have any info and/or help about these conditions ? At the moment she basically just gets through life as best she can but it does seem like a struggle -when she is at her worst she is basically bedridden - I have been taking her to a medical massage therapist and this has helped with the associated bad neck ect - before this she would get frequent neck lock ups where she basically could not turn her head left or right and again at its worst could be totally debilatating and have atually witnessed her crying in pain from this - but like i said the medical massage therapist has helped a lot with this but it does cost - £25 per half hour treatment - but I would go without food if it meant alleviating her pain.
We are not at that stage yet lol - But i am just asking for help or her behalf and any tips on coping or what specialists she could see that could be helpful - I don't mind paying if it will hep her. The GP basically has said its all untreatable and has as such washed his hands of her - Not literally but just that he said he cannot help with her main ailments but he is there for anything else.
Any help would be appreciated.
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Comments
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I have Nystagmus too and receive DLA. Is her vision severe enough for her to be registered as partially sighted?Sealed pot challenge #232. Gold stars from Sue-UU - :staradmin :staradmin £75.29 banked
50p saver #40 £20 banked
Virtual sealed pot #178 £80.250 -
Do you live together and are you working?0
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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.make the most of it, we are only here for the weekend.
and we will never, ever return.0 -
Has she spoke to RNIB & Nystagmus Network? www.rnib.org.uk & www.nystagmusnet.orgSealed pot challenge #232. Gold stars from Sue-UU - :staradmin :staradmin £75.29 banked
50p saver #40 £20 banked
Virtual sealed pot #178 £80.250 -
Well she cannot read text on a TV screen Nor "Normal" sized print from a newspaper - she uses a magnifying glass to get by when reading "text" weather from newspaper of mag/book. - As far as I know she basically "Gave Up" when told that an eye test would be useless due to her conditions, Is this the case or should I be getting her to the opticians ? I have no problem in giving her a helping hand and taking her to see a different optician.I have Nystagmus too and receive DLA. Is her vision severe enough for her to be registered as partially sighted?
Yes we do live together - I look after her while doing Self employed work - I am an electrician So we get by but the situation isn't that great as basically when I do go on jobs ect she has to either spend days with her daughter (from previous marriage which is not really a problem or spend time with my father who is 76 - Like I say it's not that she CANT do virtually anything it's the fact that she has adapted - but can still suffer from sudden dizzy spells and falls. She was also in a lot of pain with her neck -until I took her to this private medical massage therapist. (apparently it's all related) - Like I say though it's not the cheapest thing in the world, but id do and give anything to have her feeling somewhat "normal"Oldernotwiser wrote: »Do you live together and are you working?
No we have never been referred to these sites - That's part of the reason for my original posting today - I am trying to find out what I can do to help her financially as well as physically. Thanks for the links.Has she spoke to RNIB & Nystagmus Network? www.rnib.org.uk & www.nystagmusnet.org
Thanks to everyone who has posted so far.0 -
Well she cannot read text on a TV screen Nor "Normal" sized print from a newspaper - she uses a magnifying glass to get by when reading "text" weather from newspaper of mag/book. - As far as I know she basically "Gave Up" when told that an eye test would be useless due to her conditions, Is this the case or should I be getting her to the opticians ? I have no problem in giving her a helping hand and taking her to see a different optician.
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.Sealed pot challenge #232. Gold stars from Sue-UU - :staradmin :staradmin £75.29 banked
50p saver #40 £20 banked
Virtual sealed pot #178 £80.250 -
my son was born with nystagmus
he is a stylist!
eye sight is ok0 -
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 goodluck0 -
Try https://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.I must not fear. Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear. I will permit it to pass over and through me. When it has gone past I will turn the inner eye to see its path.
When the fear has gone there will be nothing. Only I will remain.0 -
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