Feeling helpless

Hello . I’m a parent needing advice on how to help our daughter . She was diagnosed a few weeks ago with relapsing ms . She’s not good at the moment and as parents we are feeling helpless . She doesn’t live with us so I’m feeling we can’t look after as a parent should even though she’s in her 30s. Her feet ,hands are bad at the moment and she’s unable to work she is obviously very down . I just want to take it away from her but I know I can’t , any advise would be welcome please . I wasn’t sure I was going to use this forum But I need to talk to someone .

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I think the title FEELING HELPLESS sums up perfectly how i have been feeling for months and particularly tonight as my wife seems to be having a particularly bad evening and has now gone to bed. You don’t say if your daughter lives alone or has a partner that is there every day? I can’t really offer much advise as whilst i do my best to support and help my wife the truth is i think there isn’t a lot any of us can do that have much real effect on Ms type things!For me as a husband its very difficult to strike a balance between helping/supporting and being totally over protective and trying to stop her doing anything.Its very easy for it to become the only topic of conversation and hard as it is normal life must go on too even if what is Normal changes over time. Be there for her if and when she needs or wants help but try not to too pushy would be my only advise i can think to offer.Probably better at giving advise than i am taking my own!

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it is very early days yet.

once it has sunk in and she is ready to rebuild her life there will be lots of opportunities to help.

sometimes just a gentle squeeze of the hand can mean the world.

however if her senses are badly affected a gentle cuddle can feel like doing a few rounds with mike tyson.

spasms and cramp are horrid symptoms. magnesium oil massaged in gently really helps.

these sort of little things at first but always leave an opening for discussion of the big things.

also if she is anything like me and my friends with ms, her bladder will be unpredictable.

a radar key costs £2 from amazon and enables access to disabled toilets and i wouldn’t be without mine.

you will make it through and hopefully your relationship will be stronger than ever.

carole x

Thank you for advise my daughter does have a partner but he’s working all different shifts so is not there all of the time. I am feeling over protective at the moment and I know deep down that i have to give her space but it’s very hard . I can see what your saying about it becoming the only conversation but maybe it’s because it’s early days and like you said at some stage we all might settle down and it becomes normal ( hopefully) . May I ask how long your wife has had ms ?

Thank you also for you advise. I will pass on your tips to her . She’s just been signed off work has her hands are very bad and it’s too painful for her to use the keyboard . I think your right as it’s early days she saying “why me " and we’re saying " why are girl” . I suppose everyone thinks and says the same . I just want to take the pain away and it hurts that I can’t . I’ll be happier when she starts her treatment .

Hi, My wife has not been officially diagnosed with Ms yet. She had an injury at work in Dec 2015 and has been unable to work since and was eventually sacked last September. I noticed her stumbling around about this time but we thought it was just her being dopey from pain killers then i think march this year she woke up with some very strange symptoms and visited GP,which eventually led to brain mri,neuro appt etc.She walks with a stick since then and the other day fell on floor in kitchen and couldn’t get up for a while,whilst i was at work.Not ideal but was pleased she told me as she tends to just say she’s “Fine” when i ask!

The first neuro she saw said she had Ms with no need for further tests based on history,examination etc etc but as only seen MRI report with the provosi he wanted to “see scan with my own eyes”.

When we went back he had left and Scan still not viewed but 99.9% likely MS.The waste of time of this 2nd appt when we were expecting to discuss treatment really hit me Hard and i felt really low for a couple of weeks when prior to that i had managed to at least outwardly remain fairly positive. The scan has now been viewed and letter to gp says highly likely to be Ms and next appt will be with Ms specialist team.Hopefully wont be too long to wait.

Hello Jecoops

I’ve been in the same situation myself got MS 5 years ago at the age 20, now at age 25. Bad days and good days will pass. But today theres alot of good medicine to use im using tysabri myself and ever since i started with it had no problems what so ever with MS. Ofcourse every MS is different, all i can say is the medicine that exist today makes it more hopeful. I was down for a long time aswell but now im over it and living like normal. Hopefully everything goes well with your daugther feel free to send message if its anything you wonder.

I’ve only just been diagnosed myself & it was more of a shock to me than my partner who had been saying for at least the last couple of years that the signs were all there. It’s hard for the family, seeing anyone suffering & not being able to help. I’m sure your daughter is happy to have you caring about her, she probably feels very alone, maybe she should join the forum too. I’m scared of the future but now I have RRMS I just have to make the best of my life, hopefully once I’ve had my next MRI I will feel more on track as my DMD’s will start. My partner contacted my MS nurse do life is progressing.

We’ve booked a long haul holiday, it might be a disaster but equally… Keep calm & carry on!!

Hope you & your daughter get on ok