How best can I help my friend whose daughter has been diagnosed with MS?

[Happytodayhappytomorrow]

Her daughter is very late teens/early 20s. She was diagnosed about a year ago.
She is not a close friend but a school mum type friend, part of a group that had weekends away etc.

Both she and her daughter are not in a good place right now (her description, not mine).

My friend is feeling overwhelmed by it I think and is perhaps burying her head in the sand a little (understandably) rather than reaching out for help. She says she has started to look into it but...

If you have been in this situation, please may you offer any suggestions for what might be helpful to my friend just now, particularly in terms of supporting her so that she can support her daughter?

And if me backing off and leaving her to do things at her own pace is your suggestion, please do say so.

My friend has a busy job whereas I am currently twiddling my thumbs quite a bit which is why I am looking for ways in which I might be able to help, practically.

TIA

My best friend was diagnosed with MS at around the same age. I was devastated, as my only experience of MS was a relative who had died very young and a much-loved teacher who had been forced to give up her career. As things have turned out, my friend's MS has followed a different trajectory, and almost 30 years on, she is living a very full and pretty normal life. The prognosis is not necessarily bad at all.

I don't know what you can really do to help from a practical point of view, at this stage, other than being available to listen. Your friend's busy job may actually turn out to be a blessing, as it will help to keep her mind off things.

I borrowed a lot of books on MS from the local library when my friend was diagnosed, and I did find these helpful. These days, I imagine that there are lots of online support groups, too - maybe you could research these and tentatively suggest that your friend might like to access the support? I wouldn't be too pushy, though - she will work through stuff at her own pace, as will her dd.

Thanks for posting paralysedbyinertia. It must have been quite frightening at the time, for you and your friend.

I know that there are variations of MS and the young lady in question has progressive and has already lost full use of one limb. Perhaps your friend has relapsing remitting which I believe is the 'better' type to have.

I have already given my friend some website detail etc but I think you're right, contact details for a support group, just to save her the few minutes it would take to look them up should she decided to contact them.

i am not sure if it helps because everyone's trajectory is very different, but I have MS and have a very full life including a (more than) full time job and 2 children (not forgetting a lovely DH). I wont say my actual job as it is fairly niche and very few people know about my diagnosis, but an equivalent role might be a partner at an international law firm.

I personally deal with it by ignoring it. I have read very little about it since the first couple of weeks post diagnosis. I have only told about 10 people, and it rarely comes up in conversation with them. I appreciate that approach is not for everyone, and i guess depends on disease progression, but it works for me for now.

So i guess what i am saying is don't assume the worst and take your lead from your friend/her daughter. The main thing is to make clear you are there to listen when she wants it (she might not once it has sunk in). There is a recommended diet (foods to avoid and foods to eat lots of). It is called something like MS diet for life. It might be worth looking that up and sharing it. I do not follow it by the letter but have adjusted my diet towards it (e.g. more oily fish).

Just seen your friend's daughter has the progressing type so you can probably ignore most of my post,

So sorry to hear that your friend's daughter has the progressive type. It's good that her mum has supportive friends around to help.

So sorry to hear this. My aunt has primary progressive MS and it’s been really tough. It’s hard standing by and feeling so helpless, and must be even more so with someone so young.

We found the MS Society very helpful in terms of information but also support eg special day trips, info about respite care. So a resource pack might be helpful, although it might also take some time for the info to sink in and to process what it means for the future so maybe judge when they’re ready to start researching.

My DM is a carer for my aunt and it really takes its toll emotionally so probably the most useful thing I’ve been able to do (I don’t live locally) is to support her and to let her offload to me. I imagine this will be needed by your friend as things progress. Of course there’s also practical things like doing shopping, running errands etc as needed.

Thank you for the replies. I’ve given my friend details of the MS Society but she hasn’t contacted them yet. Should I get some information from them for her do you think?

I think just give her time. It’s a lot to get your head around, and even after a year she might feel like accessing certain types of support makes it all a bit too “real”. Especially if she’s not a close friend I think it might be difficult to persuade her, however frustrating that might be. That being said if you think there’s actually a risk/safeguarding issue then you might want to seek professional advice.

I don't have any safeguarding issues at all.
I'm going to do as most of you have suggested and stay in touch with my friend and offer support but let her guide the pace at which she accesses help.

Thank you all