Hi, my name is colin152! — Scope | Disability forum
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Hi, my name is colin152!

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colin152
colin152 Community member Posts: 1 Listener
Hi everyone, I am a carer for my wife who has neuropathy Anti Mag which is one of the worse! 
The disease has cost us a lot of money as there as far as I know no charity! So little is known of this illness which is very very cruel and has turned our life upside down and around the wrong way! She is now house bound! In some ways cancer would be preferable at least there is a chance of a cure with all the research, they came up with cures for hiv and found a solution to covid! So little if any research has been done to this disease!
I have up to now had so little help or support my wife is almost suicidal the only thing keeping her alive is our grand children! 
I am so sorry for venting here but no one gives a damn, 
and yes I am suffering as well!
thanks for listening x

Comments

  • Beaver79
    Beaver79 Community member, Community Co-Production Group, Scope Member Posts: 20,260 Disability Gamechanger
    edited February 2
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    Hello @colin152 Welcome to the Community. I am so sorry you are both having such a difficult time. Being a carer can be very isolating as very few if any people ever ask how you are. We will always listen on the forum. We are a friendly and supportive community. Have a look around and join in when you are ready. If you have any questions please ask. 
    Has your wife had a Needs Assessment. A health and social care assessment is carried out by Social Services to find out what help and support you need. Like healthcare, equipment, help in your home.
    https://www.gov.uk/apply-needs-assessment-social-services

    Take care.
  • chiarieds
    chiarieds Community member Posts: 16,103 Disability Gamechanger
    edited February 2
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    Hi @colin152 - & welcome to the community. I'm really sorry to hear what you & your wife are going through. Altho I'm interested in neurology both as a long retired physio & also having neurological problems myself, I must admit I haven't previously heard of Anti-Mag Peripheral Neuropathy. Therefore I do apologise if you've come across this before, but with you mentioning no charity (I presume about this very rare form of peripheral neuropathy), I've had a look & came across this USA based website, & have just finished watching this webinar: https://www.foundationforpn.org/webinar-anti-mag-peripheral-neuropathy-an-overview-with-richard-lewis-md/
    The IMAGiNe study which is mentioned in this video, which contains further info if you scroll down: https://www.foundationforpn.org/imagine-study/
    Some info also here: https://www.gbs-cidp.org/anti-mag/ tho I think the 1st site is better.
    I don't know if any of this is helpful, but is the most up to date info I can find. It's not the same, but I find the most up to date info on my neurological problems has also been from the USA. There's always hope with ongoing research. My best wishes to you both, & your family; the most important things in life.


  • Ada
    Ada Scope Member Posts: 14,287 Disability Gamechanger
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    Just a warm welcome from me x
  • Jimm_Scope
    Jimm_Scope Posts: 2,705 Scope online community team
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    Hi @colin152, welcome to the Scope community and thank you for joining it! :) I see you've already had some lovely welcome messages from some other members. I hadn't really heard of Anti-MAG peripheral neuropathy before, I just did some reading about it. It does sound so difficult to have. 

    Do either of you receive any benefits? If she is housebound then she could look to apply for PIP as well as some other benefits, and also carers allowance if you are her carer. Turn2Us has a benefits calculator that you can use to see what you and your wife might be entitled to.

    I know how difficult it can be trying to maintain everything while also caring for someone so close to you. There is something called Respite Care that we have an advice page on. It has links to help inform you on how to apply with your local authority but also links to charities/grants that can help.

    Let us know if you do receive any benefits and if you use the calculator, we can help signpost or direct you on where/how to get any benefits it says you might be entitled to!

    Also, please keep us updated on how you and your wife are doing/
    They/Them, however they are no wrong pronouns with me so whatever you feel most comfortable with
    Online Community Specialist

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