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multiple sclerosis - Page 2 - Carers UK Forum

multiple sclerosis

For issues related to specific conditions and disabilities.
Hi Sirius,
My husband has primary progressive ms and was diagnosed in 2003.
I kept it quiet from my workplace until this week when hubby was feeling bad with a urine infection. Some workplaces are not sympathetic to you having time off for problems with your spouse etc even if you have worked for them for nearly 30 years.

Hi Caz, sorry your workplace is so unsympathetic Image
I told my boss as soon as my oh was diagnosed, but she already knew something was amiss as it took quite a while and a lot of tests for the diagnosis Image
She is incredibly supportive and the main reason I am still able to work, but there are not many like that.
I am lucky ass my school are supportive - but... if I don't work I don't earn and we need the money, so I work, and juggle, and work some more.
Seems really unfair to me that I can't claim tax relief. would make a huge difference to us if I could. I feel like I am being penalized for trying to make a go of it on our own without relying on too much support.
Hi sirius,
they don't make it easy for anyone I am fighting social services at the over withdrawal of transport to day care twice aweek for my wife. They keep moving the goalposts but we will win in the end never let the B-------s grind you down.

All the best Chas
I care for my wife who has MS. A very difficult and unpredicatable condition to Carer for.

please feel free to PM if you want to discuss anything in particular
Hi Sirius,
The tax is catch 22 too as I earn enough to pay it (too much to get carers allowance), but not enought get relief on it!
The incentives for carers who can still work are non existent.


Hi, well i have just joined the carers uk. I look after my wife Suzanne. She was diagnosed with MS when she was 25 and she is now coming up to 36. In that time she has lost almost all motor function's. She can only now talk and move her arm's a very slight amount, it has taken everything else from her.
I have been looking after her for 10 yrs this coming January, it took her ability to walk very quickly. Which also put me to bringing up our son who was 2 at the time, he's 13 now.
Has anyone else experianced this advanced form of MS ?

I seem to have lot's of up's and down's with getting reliable care agency help. Anyone else have this problem ?.
I seem to have lot's of up's and down's with getting reliable care agency help. Anyone else have this problem ?.
It's just about par for the course for most people, I'm afraid.
Hi, I have a question to put to people with experiance on the matter.
My wife is having lot's of problem's with the catheter she has. We have the problem of regular by-passing, so i get many a night changing wet through beds.
Now the main question,
They have asked us about fitting a super pubic catheter, has anyone had an dealing's with these ?. Either good or bad report's i could use the info.

Mant thank's.
my husband had a super pubic catheter fitted last October. he had been having so many frustrating accidents, which was not only unpleasant, but extremely upsetting for him, which of course made his MS worse. it totally changed our lives, after a couple of months settling in, he did have some initial problems with bladder infections, but a constant low dose of antibiotics has sorted that out. Now he is much more relaxed, much more comfortable, and the best thing is - we can actually leave the house!
I understand that for men the fitting of a SP catheter is pretty much irreversable, but not the same for women - my husband has a wash out once a week, done by District nurse, and the catheter is changed every 3 months, again by nurse. I just help him empty it, when he's a bit tired, and keep the wound clean.
Hope this helps.