Hi Lucy,
Firstly, I’m so sorry to hear that your Mum’s been diagnosed with MS - can I ask which type is it? Depending on what she’s been diagnosed with will decide on the treatment that she may be offered - there are many Disease Modifying Therapies out there for RRMS, but none as yet for progressive MS (but research is happening all the time so fingers crossed for the future). I would encourage both you and your Mum to investigate what’s currently licenced in this country, as there may well be one that suits her, and she may not suffer many of the listed side effects. It’s a game of roulette, but you’ve got to play to get the pay out, I guess. Speak with an MS Nurse, as they’ll have a lot of invaluable knowledge of other therapies, like CBT, mindfulness and physio, which will help with the mental and physical symptoms as your Mum learns to cope with this bloody awful condition.
I understand how you feel, as seeing someone you love and that you’re close with suffer with MS is so difficult to endure, especially if you don’t know what to do to help. When my Mum was diagnosed, I really struggled to deal with it because I was so young (I was about fourteen or fifteen when she was diagnosed with RRMS, which soon became progressive) and I didn’t know or understand anything about MS, so it was incredibly confusing and painful. Looking back, I don’t think I dealt with it at all until well into my twenties, and even at thirty now I struggle.
I think what’s key to mention here is to ensure that you look after yourself at this time - I know this sounds selfish and counterproductive but believe me, if I’d looked after myself it would have made things much easier! If you’re in a good way then you can help your Mum simply by being there and by being her daughter. You could help her do some research into drugs and perhaps clinical trials if she feels like that would be an option? If she does then great, and her neurologist can certainly point her in the right direction. Taking an interest and showing support in this way I hope will help her in a way that’s helpful and proactive.
As for progression and memory, this just depends on person to person. In my Mum’s case, her memory is still sharp as a tack - she gets a bit foggy sometimes, but she certainly knows what’s what! That said, the progression of her disease has been the kicker and it’s really screwed her. However, her case is atypical and not at all common, so please don’t use her as a benchmark!
Find support where you can and don’t be afraid to talk about your Mum’s condition with friends and family. I know I’ve just rocked up here all new and stuff, but if you would like to talk to someone who’s been in your position (and still is), then I’m more than happy to chat - just drop me a message. I completely get what you mean when you say that you feel like you’re losing your Mum, and you’re not alone.
I hope this is helpful - it feels like a bit of a ramble! Take care both of you.