Hi there …
My 22 year old child has just been diagnosed and I’m in bits…scared and overwhelmed.
But knowledge is key …
She is diagnosed with rrms.
Advice tips anything…
I’m Shauna BTW…thanx in advance
Hi there …
being in bits , scared and overwhelmed, sounds like a normal caring response to me. You will both need to support each other and will learn lots everyday. My regular comment is: Communication is key. Try and build a support network of family friends and medical professionals so that you can share things around.
Although it is much easier said than done (particularly in the early days) try not to worry about the “what ifs” deal with “todays normal” Learn to listen to your body so that you can enjoy the good stuff and learn from the bad stuff.
For young people to learn a bit about MS I would suggest taking a look at the shift.ms website, they have some really helpful videos.
No 2 incidents of MS are identical so no one will have 100% correct answers. However there are many people on this site with lots of experience and only too happy to empathise and offer support. Wishing you both all the best.
These first few weeks will be hard, but whatever you do, stay away from Dr. Google! Get your information from forums like this and sites run by bonafide MS organizations.
After a while, your daughter should see a pattern with her MS. She’ll learn what makes it worse, when she can push herself, when she has to take a break.
Don’t tell her that she can’t do something. If she’s willing to try, be there to support her. Both of you will need to recognize when she has to rest and when she can keep going.
Most of all, keep in mind that there are wonderful drugs out there now that help stop the advancement of MS. The majority of us who use canes, wheelchairs, and lifts developed MS decades before the drugs were created, so we’ve dealt with the natural progression of the disease. Your daughter’s going to have a normal life, it’ll just be a bit more complicated than any of you had planned.
Hello Shauna. I know this must be a scary time for both you and your daughter but I’ve had MS since 1972 and have enjoyed a happy and eventful life. MS is not the end only the start of another of life’s chapters. Try and stay positive - stress is not good for either of you - you are not alone in this unknown journey, we’re all here for you.
All of my symptoms, except an intentional tremor, are invisible and internal ones at the moment and I haven’t yet told my mum.
She know it’s a possibility as I had my first attack about 7 years ago.
I’m more worried about telling her. I’ve had time to adjust to the possibility and whilst I’m obviously not happy about it I I’ve reached some form of acceptance and have discussed with with friends and my wonderful partner.
I don’t want my mum to worry about me or to fuss around me though. My sister died earlier this year so I know she’ll find it tough. I’m not sure how to tell her to be honest.
I know it’s a mother’s job to worry (I have my own to worry about) but I don’t want her anxiety to cause me anxiety. Does that make any sense?
Coming from the mum point to view, any advice?
This sounds like a tough call. Only you will know your mum well enough to judge what you say. Personally I think that as she knows the possibility of diagnosis it could be better to let her know so that you avoid recriminations from not saying. Also (in my opinion - and not knowing your mum) I would suggest that knowing is less stressful than speculating.
As a mum, she’s already worrying. Telling her about your diagnosis isn’t going to add to that. If it was my child, I’d want to know. Yes, she’ll worry and fuss, but just let her know if she starts smothering you too much. Mine is 80, and sometimes I have to tell her to back off.
sorry for only replying now.
have been taking time to digest this.
thanx to each 1 of u who answered, meant so much.