My mum has secondary progressive MS.
Ive never been allowed to talk about it because she wanted me to have a ‘normal’ childhood, but I have all these bursting unanswered questions and worries.
Im now in my 20s and the questions and worries aren’t getting better, they’re getting worse, because Im now hundreds of miles away at the same time as she’s becoming increasingly ill.
I don’t know how to find out about it and learn how to deal with it.
I don’t know how to support her now when she tells me the MS has destroyed another bodily function, and I don’t know how to support her in the future as this continues to get worse.
I’ve never talked about it to anyone. I tried writing this post before but its a real can of worms, i don’t know how to do it.
Any tips on where to start finding out about things or who i can talk to?
Or any tips/personal experience on helping support a family member with MS when you don’t live with or near them? - possibly as an adult child with a parent with SPMS?
I’ve Googled, but its not the same as hearing proper information from an actual human being, whom you know understands.