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multiple sclerosis - Carers UK Forum

multiple sclerosis

For issues related to specific conditions and disabilities.
any one else out here with experience of caring for this? MS society is too geared up for sufferers and doesn't really seem to recognise that we have our own issues. Both mother (deceased and very much missed) and husband are suffereres - as to be honest - so am I - it may not physically affect me, but it sure does mentally
hi Sirius,
OH has and sister in law had ms.(Her oh left her to it, with 2 small children to bring up) OH has ppms and yes Image we both suffer from it!


My wife was diagnosed with MS about fifty years ago and it has affected my life ever since, though we were not married until seven years later. I don't complain about this because we are devoted to each other but I now find my life very disabled in my turn - I can't go off and do things as a normal person would. This does cause stress and I know I'm stressed when I don't open the post! Over the years I have found that it is very difficult to talk about MS with carers because they feel guilty about their frustrations. Find out if you have a Carers Support group in your locality - you can refer yourself and they are concerned to help YOU, not the person you care for.

Hi Robert, we had a local carers support group, but living in a rural area the meetings were never near enough for more than a couple at a time (if it takes 30 minutes to get there and 30 back, you tend not to be able to stay long!) so it has been suspended, due to lack of support.Even with sharing travelling you often found it was you, the person you travelled with and maybe one other that were there, due also to the various constraints living with ms puts on your life.
The unfortunate truth is, living with someone with a disability is a disablity Image
Carers Support groups are a very specific operation which should be available in most communities. They are normally funded by the County Council and are effectively performing the statutory functions of the County Council, with professional Carers Support workers who are paid to perform this task. They will usually help you to ensure that you have all the benefits you are entitled to, will assist with negotiations with Adults and Community Care if appropriate, and will provide support. I know by experience that they can be very effective, and there is no nonsense about eligibility criteria or risk assessment.

Check the PRTC web site (Princess Royal Trust for Carers) and you should be able to search on your post code and get the contact details of your local group.

You can find local carers organisations by going here
http://www.carersuk.org/Information/Fin ... anisations


Yes my Hubby has M.S and was diagnosed in 1987 my youngest child was not even a year old.
It can be vert hard sometimes. In the beginning i cried a lot but that passes. I still wanna cry some days but try hard not to. I've had to give up my hobby (Osmond stalking)) as he can get ill and lose the use of his legs without warning but thats life. Hubby seems to have short term memory problems at the moment which can be very frustrating.

The local carers support group still does all the other things, it is the monthly 'get together' that does not happen.
Sorry, it was that 'arm' that I meant, not the whole thing Image
My wife has ppgms i care for her full time we are both actively involed with our local branch of the ms society Tameside & Glossop both being on the committee we find that helps us get through it because we are also helping others.
only just caught up with this...my hubby has MS, he was on the committee of the local society, until they started having their meetings in a pub with no wheelchair accessible loos!
If they couldn't even support their own committe members, what would they be like with other members!
They have monthly coffee meetings, but again, in unsuitable places for wheelchairs. The local branch doesn't have carers meetings, unless you want to "make something", nothing for a good old natter.
I have found the Carers Associations much much better.
ETA: robertt: I can so sympathise with you, I'm now in my late 50's with "retirement" looming, and for the last 30 years have been living with MS, you feel, when is it my time....I have manged to bring up three wonderful children, but they are leading their own lives now (and quite right too) ...and I have never felt so isolated in my whole life as I do now.
It reminds me of a phrase from a magazine, when a wife questions her disabled husband about going out. he replies" but I'm disabled"
the wife's response - "But I'm not!"

sorry, having a miserable day, week, month,year......