Hi everyone, im new here - My mum will be 60 this year and over the past 5 years her mobility has deteriorated rapidly. There was a mention years ago of MS (which she always denied - we have asked her for years is this MS? And always got the answer of no i just have a bad back.) But LAST NIGHT shes finally admitted she has it but says there is nothing can be done. She was diagnosed 37 years ago - The past month she has fallen several times and seems to be having spasms in her legs.
Im just here for abit of advice really… My mum is a very proud and private person and i feel like shes maybe not admitting to herself as well as everyone else how bad she really is.
Is there any type of treatment for MS??
I would love to have a bit more knowledge to try and speak to her about options. I can only assume a doctor would have done all this previously, but i just feel helpless and would love to try and help her if possible. Shes very closed off to the idea of having something like this and is very quick to say nothing can be done, which may be true i just dont know?! Shes been in denial for so many years now and im unsure if shes had any treatment.
I had a friend who i worked with many years ago and she had some type of injections which took her from being wheelchair bound to living a some what normal life but obviously her type of MS could have been different.
From reading online i assume mum has the secondary progressive type as growing up i remember her being fit and healthy a lot of the time, but occasionally would have been off her feet for a few weeks (looking at it now this would have been the relapses i can only assume)
Where do i start? Can i ring doctors for help? Obviously as its not me i worry im not going to be able to do much, but watching my mum pretty much waste away is heartbreaking
That’s quite a burden that your mother has been carrying, and a jolt for you and the rest of the family even if not a complete surprise. At the time she was diagnosed, there was absolutely nothing to be done. As I understand it, it was routine for people to be advised to get on with their lives and try not to dwell on it. Your post suggests that your mother has done just that and lived her life and raised a fine family and who could quarrel with that? The fact that the cat is out of the bad means you’re all in a new phase now, though. It might have been very hard for your mother to break those decades of silence. I hope that she feels that a weight has been lifted. You have explained that she is a private person; I think the thing for you is to be guided by her and to try to resist any temptation to dive in and try to sort things out. You have all taken a big step towards helping your mother come to terms and maybe making her life a little easier and more comfortable, but it might be a slow process and that’s OK. She is lucky to have loving family around.
Hi, I’m 58 and its not uncommon to not admit/mention MS to other people n close family) until its obvious / you get to a point where you cant ignore MS effects…especially on mobility. You just want people to see you as an equal person not as someone with MS…who needs help. It took me a while to really notice that people who are really close to me just help me in small ways without saying anything and carrying on as if nothing happened …a small nudge when trying to get up from chair, carrying food and drinks to the table for me, linking arms if I wobble etc. Maybe your Mum just wants to be able to be your Mum, not Mum with MS. She probably needs and is grateful for your support.
Where to start? You’ve found this site, which is a great place to start, you can check out the various booklets regarding medication for MS - there are a lot of medications / treatments / therapies for MS now compared to 37 years ago.
Let your Mum know how much you love her while guiding her to this site, or print off some of the booklets on medication etc. for her to check out in her own time. It’s hard, I know, but try not to be too pushy. It’s hard for us to admit we’re not what we once were, and telling others can leave us feeling a bit low and vulnerable. We don’t want people taking over our lives.
Thank you all for your replies. It’s very much appreciated. I suppose i just feel like i want to be there for her, but at the same time i worry she isnt trying to help herself and if i could help her with information, support etc in any way i would. As i said, shes very closed off to the idea of help but if she could benefit from it and improve her quality of life, i dont know why she wouldnt do that. As you’ve said though and i totally appreciate, its hard to admit and ask for that.
In the past 10, but mostly 5 years our family has watched her steadily decline with mobility, shes now at the point she cant walk from one room to the next without help and fell twice within the past week and im worried about her.
I will definitely be giving her as much support as i can, my worry is she wont want to know anything about it, and i worry the denial aspect of it isnt doing her health any good
I understand a bit of where your mum’s coming from, because I’m about the same age but have had it a bit longer. Like Alison100 said, back then, there wasn’t anything to be done about it. Here in the US, they frequently didn’t even diagnose it until you were bedridden or in a wheelchair, because the assumption was that you’d be happier not knowing what might happen.
The thing your mum needs to recognize now is that, aside from having MS, she’s getting older. If she wants to remain active and reasonably independent, then she HAS to start taking her physical needs into consideration. There is absolutely nothing wrong with using a walking stick, a rollator, or even a wheelchair when the situation warrants it. If she falls and breaks a hip or a leg, she’ll be worse off than ever before. Once she tries using walking aids, she’ll be kicking herself for not getting them a few years ago.
Don’t push too hard right now, but try openly discussing the options available to make her life easier. Also, if she heads into another relapse, have her check into getting IV steroids at the hospital. I’m not sure how the NHS handles things like that, but the super-steroids will stop a relapse in its tracks. She’ll still have a few problems afterward, but it won’t be as bad as past relapses.
