Hello my partner has just been diagnosed how can I best support him, I feel so helpless
Just keep talking to him. Do your own research though.
My wife jumped in and joined various sites and help groups and I actually resented it. It was very early on, I was still getting my own head around the diagnosis and felt that she was hi-jacking “my” illness! Unfair I know, but that’s where the talking comes in. Let him dictate the pace but be informed in your own right what the disease and terminology all means, so when he’s ready to talk, you can converse from a position of knowledge too. It’s life-changing for you too, you have a right to know about it and a right to be informed.
Thanks… I understand what you’re saying
Hey Owl, welcome to the group. Sorry to hear about your partner.
I think the best thing you can do for them is to educate yourself about MS, do not be afraid to read in to it, learn about the different types, and symptoms. Make sure your partner knows that you are there for them, just to listen to, or let them express their emotions to you.
Your partner is going to be going through a very emotional journey right now, and it will take everyone different times to process their new diagnosis, just make sure your there for any support they may want or need when they are ready.
From an MS sufferers perspective, the hardest part, for me at least, has been the feeling of no one understanding what I am feeling or going through, and the best thing my partner has done for me, is just to be there when I’ve needed them, just to either listen to me, or help me make a decision about a treatment.
There is so much information out there to read, on this site alone as well as the NHS site as well as many others. I would say that communication from you both you and your partner is key, and a great way for you to help with that, is to read in to it so you can offer your opinions as honestly as you can.
Thats just my thoughts, but there are many great people on here who I am sure will offer their excellent advice too. Hope this helped you, even a little
The MS Trust have some excellent reading, not academic but professionally drive and practical. You can browse and order on their website an they give them away for nothing.
Just be there for him. Don’t treat him like he’s a sick person or suddenly fragile, but understand that he may not be able to do some of the things he used to or at least not at certain times. Your lifestyle and routine might see some changes. If he has to cancel plans at the last minute, don’t take it personally.
Give yourselves time to grieve and adapt. Nothing will really change, not for a long time, but if neither of you was expecting this diagnosis it’s going to be a shock.
When I got diagnosed 28 yrs ago I went over the top looking up stuff and went to a MS drop in meeting. I walked through the door and saw 10/12 people in wheelchairs round a big table, that freaked me out and I didn’t want to know how bad it could get I just wanted to know about ‘now’ an not the future. It’s going to take ages for it to sink in, see an MS nurse and pick their brains about treatments/drugs, he will just want to know what he can do and not what he’s maybe not going to be able to do in the future.
He keeps saying he isn’t going to let it beat him and no way will he ever use a wheelchair…he says that if his consultant keeps trying different medication then they will find one that enables him to be nearly ok and then he’ll be able to find a job( his employer finished him before we knew what was actually wrong with him). I don’t want to burst his bubble as he needs something positive in his mind to keep going but I don’t want him to be unrealistic either
I’ve never been offered any DMT’s just pain meds so maybe all the new med’s that are around will help. I was working on building sites and doing roofing until 10 yr ago so I got 20 yrs of ‘normal’ out of it and I know a woman who is in her 70’s, diagnosed 30 yrs ago and she’s still walking around as if nothing has happened.
Don’t worry, he’ll come around. He won’t suddenly need a wheelchair tomorrow - it can take years, if at all. My walking went in 5 years from being normal to needing a stick for anything over 50 metres unsupported. You get used to having the stick around, as a confidence builder and it loses its stigma and becomes an enabler. Last month I went to a Festival and realised I’d never be able to walk all that distance, even with a stick, so I hired a Mobility scooter. It was merely an enabler, it made the event possible. Today I collected my owned folding electric wheelchair: I don’t know when it will get used but it will sit in my car boot until it does, like a security blanket. It’s just stages of realisation.
Depressing as it sounds, you adjust to it. Everyone goes at different speeds - there are people on this forum who have had MS for over 40 years.