Hi Everyone.
Our 28 year old has had their diagnosis confirmed as RRMS - we live in Berkshire and just trying to navigate our way through. If there are any other parents in a similar position I would love to connect - I have found some with children but it is very different trying to support someone who has set up their own life/work etc and very independent. I have reached out to some local support groups as well. So difficult to get a handle on things as everyone seems to suffer differently. How do you get your head around such a disease/ not knowing what is to come etc? Thank you
Sending love and hopeful thoughts. I have had PPMS for 25 years.
Boudsx
Thank you , it is such a a quagmire to get your head around.
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Hi - my 26 yr old daughter has recently been diagnosed. And I’m struggling with it. Massively. Trying to ‘be strong’ for her but my heart is shattered. I feel pathetic … useless … angry … sad … scared … I don’t know how best to help her.
Hi Tula - where do you live? The MS Society has some great volunteers and groups - i have only been to one meeting so far as this is all so new to us - the same as you. We have had medical issues and mental health issues in the past so I guess that has actually helped us to try and deal with such devasting news. What type of MS does your daughter have? Please keep reaching out and engage - we can’t do this alone but as a group we can gain strength.
Hi - I’m in Lincolnshire. Still trying to get my head around the terminology etc … my daughter has RRMS (I think that’s right). She has identified the medication she wants to go onto, but is waiting for this to come through. She’s experiencing strange symptoms again at the moment. It’s hard - I don’t know how to help, what to say / not say … I’ve dealt with serious medical issues myself, but this I could deal with as it was my fight, my issue, my pain. Seeing my daughter facing this is beyond hard. I know there are others in a similar position (like you) and I just feel I need to reach out. X