Forum

MS and life expectancy

Primary progressive MS
#1

Hi

My mum was diagnosed with MS 2 years ago following a heart attack. Looking back she probably had symptoms at least 3 years before that. My father, who was the main carer, recently died and mum has had to move into a home. She’s declining rapidly, cannot weight bear or even shuffle herself in a chair, has visual and hearing problems, is doubly incontinent quite often and is now losing use of hands and arms.

She has said she doesn’t want to go on and has more or less given up on life. Whilst I do not wish to lose my mum I do believe that there should be an element of choice though understand that others don’t share the same view. I know it’s a how long is a piece of string but I wondered if MS shut down any vital organs or what the future might hold in terms of decline.

#2

Hi,

I am so very sorry for the terrible time you and your mum are experiencing. MS is so varied that really it’s impossible to answer your question…some of us have more rapid decline and some of us are slower. MS is rarely fatal.

Has your mum seen a neurolagist recently? I would think your best course of action is to find a neurolagist with an interest in MS.

I also believe there should be more choice available but it’s such a sticky subject with so very many pitfalls.

I would hope a decent neurolagist or MS nurse would at the very least be able to help your mum with her symptoms. Your GP should be able to help you to get in touch with either and an MS nurse should be able to visit your mum in her care home.

I wish I could offer you more help and information. This site and the MS Trust are both reliable sites and both offer a helpline for family as well as MS sufferers…the number for the MS society helpline is at the bottom of this page. They are extremely kind and knowledgable people who man the lines and they will be more than happy to talk to you.

my very best wishes to you and your mum,

Nina x

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#3

Hello,

As Nina says, nothing is predictable and MS itself isn’t fatal. The only thing I can say is to keep trying with your mother, even if she appears to be giving up. Visiting regularly and talking about your day may well have some benefit, even if she isn’t showing any positive response.

I watched my own mother’s decline through dementia and it was truly heart breaking…

I wish you well, Steve.

#4

That’s jolly difficult I have had PPMS for over twenty years and and hopefully a long way off my demise. If your mum has given up it is hard to prompt her to change but it must be hard for you . I feel for you and for mum.

Don

#5

Thanks to everyone who has replied. She was seeing a neurologist and originally was on Tysabri but after no improvements she was taken off. She did have some brief physio but didn’t do anything once the physiotherapist left the house. I had a brain tumour 4 years ago which severely affected my left side. To this day I pay for private physio and it’s hard work. I think she expects the 15 minutes or a pill to work but we know life isn’t like that!

All that said, in my opinion, she’s had very little support from the MS nurses and other community based professionals as well as well as hospital based care. My sister and I try and visit a couple of times a week but it is hard work.

I guess we just have to see what happens, I just wanted to think about what might happen and help mum through it all.

#6

I really feel for you, it’s very difficult watching someone you love declining to rapidly. I can sympathise as my dad is in a similar position but is terminal and it breaks my heart and the rest of my family are suffering too. I know there’s not much anyone can say or do that will make the pain go away but your mum will be going through the grieving process as well as struggling with her symptoms.

I would suggest that you read up on the stages of grieving to understand better, they are denial, anger, bargaining, depression and acceptance. Not everyone goes through every stage and if they do the length of each stage varies with each person. Although mum isn’t terminally ill it’s common that people grieve for the loss of the future they had planned. Your mum appears to have had a lot happening over the last few years and it all might have just come crashing down with this last blow.

Understanding this process a little may give you an insight into what might be going on in her mind. She just needs your love and support and will understand that you can’t look after her or be there all the time. Don’t be hard on yourself, she has a lot to cope with but so do you and the rest of your family. Just make the time with her as pleasant as possible doing things together that you enjoy.

I wish you the best, there is a section on this forum for family of those with ms which may help a little but feel welcome to use us if we can help in any way.

Cath x

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