New to MS

Caring for someone with MS
1

Hi all,

I was wondering if someone could help me understand a bit more about ms and the stages of it? My partner’s mum has it and I want to be able to support him and his family the best way I can. At the moment she’s really not in a good way and he knows she’ll be going into hospital in the next few days. He as well as his dad are her carers and have to help her do a lot of things including getting her out of bed and dressed etc. I always find it hard talking to him about it as I hate seeing him down, but as someone who’s never come across this condition before I don’t really know how it how affects someone. I hope this question hasn’t offended anyone just really want to be able to get the best understanding of it so I can help xxx

2

Hi

What is difficult to get your head around is that MS is so unpredictable.

I was diagnosed in 2008 and at first I could have a rough idea of how my day would go.

Since then though I know that it is a contrary beast and does whatever it wants.

The best way you can support your partner is to place a gentle hand on his shoulder and be there for him.

Ask him how he is feeling, ask about how his mum is doing.

How does he feel about giving her personal care? That is a very big deal.

Just let him know that you care.

How he responds will point you in the right direction.

It will be alright you know, promise! xx

3

Hi Dbees, you sound a very kind hearted person and Im sure your partners family appreciates you.

As Carole says, MS is quite an unpredictable beast at times.

Can I ask what the lady is going into hospital for? I wonder if it is due to her MS or something else.

Just to give you a little bit of info re MS.

There are 4 main types of MS, which are ;

Benign MS…a person may just have one episode of symptoms and nothing else

RRMS…this stands for Remitting/Relapsing…people have times where they are fit and well for a period…could be years…especially if they are on a disease modifying drug (DMDs). They can also suffer from periods of active symptoms like eg…severe mobility problems, incontinence, brain fog, spasms…to name but a few symptoms

SPMS…this often is the next stage from RRMS…where people can feel ill all the time

PPMS…this is the type I have, only with the word Spinal in front of it. Spinal MS is rare, where demylination lesions are only present in the spine, not on the brain.

Demylination is the word for damage to the outer covering of nerve pathways. It is thought one`s own immune system attacks myelin, causing damage, which stops messages from the brain and spinal cord, getting to where they are meant to go.

PPMS…primary progressive MS starts as PPMS and remains as PPMS. It`s severity varies too. For me, it meant losing my mobility a short time after it began.

I need carers for all my personal care, cooking and taking out.

I have an agency, who come in twice a day, plus my hubby who is with me most of the time.

I hope things ease for your partner`s mum.

Love Boudsxx

I hope this info helps you understand how MS works…or not!

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Thank you so much for replying! From what I’ve gathered and what you have said you are totally right it’s unpredictable and it must be so hard for yourself and other people who have MS to feel like you don’t have complete control, so my heart goes out to you. I guess that’s why I find it hard to understand everything about it.

I do always make sure I ask how he is and his mum but I know he finds it hard to open up and instead just gets very agitated when he’s had a hard day with it all (which is totally understandable).

He is in his mid 20s and had to care for his mum for the last 4 years when she became wheelchair bound. I know he finds it hard especially when it’s late at night and she’s in pain calling for him or needing help in the shower. I have suggested to him to maybe join this forum because he’s never met anyone else going through MS or met anyone who has cared for someone with it and I think it would be nice to realise that you’re not alone.

Everything you have said had been super helpful so thank you xxx

5

Hi Bouds,

thank you so much for replying to my message! I really don’t know why she going in this time, however she went in a few times last year because she had a UTI and wasn’t making any sense when she was talking. She usually spends around 6-8 weeks in hospital before coming out. I don’t know if it’s the same this time round but my boyfriend said when he saw her yesterday her eye on one side of her face looked droopy.
The way you have just explained a bit about MS was honestly the best way that anyone has ever described it to me so thank you! I mentioned she had a UTI but I was wondering how that affects someone with MS?
I hope you are okay during these crazy times xxx

1 Like
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UTIs cause relapses which we aim to avoid!

I have a maintenance dose of trimethoprim which is one tablet just before bed time.

It has worked a treat for me.