multiple sclerosis

For issues related to specific conditions and disabilities.
My wife has been diagnosed for 6 years now, all was fine relatively, but her `attacks` are getting worse . I work, my wife works part time , and we have a 2 year old madam !!! Who we love. I also have bronchectasis so my lungs are nakerd , some more support for me would be good ,mmmm
Hi, just joined this forum. My wife was diagnosed with MS about 3 years ago having actually had it for 19 years, which of course then explained a lot of issues. She can still just drive but not walk more than a few steps unaided and is putting on weight. She has had to retire on a meagre pension which does not help us. She is getting more and more frustrated and I of course get it all when I get home from work. By 7pm she is really done for the day. We are trying to manage this , we have started going to a slimming club, to get out as much as anything, but she is slowly giving up and I am feeling the strain. I also need to work harder and longer now, I run my own business, and there seems no end, not sure what do do longer term.
Hi my wife had one of those and we kept on getting UTI's then having antibioctics and having to have the thing changed then it would cause problems with her MS after a year or so it was decided to have it removed and we have some very absorbant pads we get from the social services via the district nurses which can last from 8pm to 9am which has made things so much easier.
starfury wrote: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.

Hi my wife had one of those and we kept on getting UTI's then having antibioctics and having to have the thing changed then it would cause problems with her MS after a year or so it was decided to have it removed and we have some very absorbant pads we get from the social services via the district nurses which can last from 8pm to 9am which has made things so much easier.
Hi, just joined here at last. Being a similar age and both trying to come to terms with my long term boyfriends diagnosis ever since, as it has been progressively getting worse since his eventual diagnosed at 28. It is incredibly hard, when hit at his prime of life when we both want to do things together but can't. I know what you mean with how lonely it is and at times the guilt to desire to go out or do my own thing, when his damed condition essentially restrains us both and I love him so much. The main thing we have always found helps is to talk and be honest. Especially when such feelings build up. We are lucky in one way now as one of his mates now helps to offer me a restbite and for them to have a boys night in or out when his MS permits it. But where possible I've had to pursude him to try new things and push his limits for his own sake. Music gigs like academy 1 in Manchester who offer great access and seating with a free carers ticket. Or Alton towers where you can take advantage of the free fast pass together with up to 3 carers/ understanding friends. Have offered a new lease of life for a positive point to be found in the chaos of misery. With our pets, we have a focus and love. And try to treat the majority of bad days as they come as rainy days with cheap films or 2nd hand cds from cex. There are many bad days and trying to be positive for 2 can be difficult, even down right frustrating to limits you never imagined. But talking helps and works both ways for he has fears as well. MS or any disabilitating condition are more than what people think they know or see. Being cared for is also hard and can be filled with guilt especially when the carer is a loved one. We all have problems, acknowledging them to deal with them helps both parties who in different ways have to come to terms with it, and try to love and care for each other. Having such fears is understandable when dealing with cruel fates in life and to face them makes us stronger together. Likewise with talking to others on the same wavelength to cope better.
Hi All,
My wife has had and still got M.S. (40 years now) at first all seemed to go well all the benefits etc, no complaints. The problem we have is with people outside, they think that because she is in a wheelchair she's thick. The people seem to sort of try and make more life complicated than need be. We have a lot of problems with people that just don't accept disabilities. We have asked for help and we have been refused that help. So I try and struggle the best way I can. This new benefit system at present is a nightmare again no help, sorry for the moan I'm just in that mood today.
Bye,
Bernard
My husband has had MS for the last 37 years - we also have brought up 3 children who as you say Izzywiz quite rightly so are now leading their own lives . But I have to say the 35 years of our marriage have been so overshadowed by this condition and most of the time we have just been left to get on with it alone - no one wants to know - I too am in my late 50s and feel that there is nothing left to look forward to - I rarely go out (just to shop) holidays are a nightmare even if we could afford one, as the frustrations outweigh the pleasure and re very restricting. I spend most of my time alone as my husband gets very tired - unfortunately one of the worst problems I have is that he is becoming increasingly agressive towards me - whatever I do is never good enough - he says that I dont understand - hec after all these years I think I do !!! life seems to be all about him - I feel so lonely and am trying to be strong - Ive even thought about leaving him and starting a new life - but who would pick up the pieces - it would fall on my children which I dont think is fair - am between a rock and a hard place and feeling pretty desperate - feels better admitting that Ive had enough but seems my life has been taken - I feel pretty worthless but have no choice but to battle on - anyone else feel the same ?
I sometimes have those feelings. Though my wife was 19 when she was told of her M.S., she is now 60 years old. It's not my wife that has the feelings that I call her black dog days. I mostly get them. This is due to the problem that I'm getting older and can't hump the chair around like I used to. That was a thank you to the swine flu and a stroke. A room on my own for an hour and rethink of what the problem is. I usually sort it out. To all carer's take care.
My wife has ms, diagnosed in 2000. I am her carer. She is very very close now to being unable to walk and I have no idea at all what happens then.
The ms nurses are non-existent. Social Services have offered nothing. The GP knows. EVERYONE KNOWS and they do nothing. Zero.

I don't even know why I've posted here because nothing will change.

It's Monday. Wednesday will be the same as today. 3 weeks ago today was just the same. It's always the same. I don't look forward because there is nothing to look forward to.

Give up? Can't. But I'm like a robot - just get up, do what is needed, go bed. Repeat. Don't expect anything nice because it'll never happen.

oh - and physical love? forgotten what that is like.
Hi

I'm new to this site. My name is Julie and my husband was diagnosed with RR/MS last June. I'm struggling as there have been so many changes, particularly his behaviour, and I'm looking for advice on how to cope with it.

Any advice would be greatly appreciated.

Thanks Julie