Hi everyone does anyone here know someone who is severely affected by MS?
What a really useful , good and empathetic post. Thank you.
I donāt know her but there is a woman not far from me who is quite badly affected by MS. Her husband is her carer. Iāve felt uncertain about introducing myself to them - basically not sure how to introduce myself - but I must do so.
Apart from that Iām not quite sure how to find those who have become isolated?
That sounds just like me, Iām an 8.5.
When Nick Mobberley became the chief exec of the MS Society I met with him in my role as Vice chair of the Welsh Council. I told him that the MS Society did next to nothing for people with advanced MS, and that I really felt this was because they were worried that it would frighten people awaiting diagnosis or people in the early stages of MS if they saw what life could be like for some of them. I still believe this. Even these forums have nowhere for people with advanced or secondary progressive ms. It really does feel like we are the dirty little secret the MS society doesnāt want to talk about.
Hi, Iām a 7.5, thankfully I still have my husband here, heās my main carer, well in fact heās my only carer. You do get isolated, friends stop calling/coming to visit, when I speak with my MS nurse twice a year, itās always āsorry thereās nothing for youā GREAT, so we just have to crack on and do the best we can.
There is a local MS society near me, but what they want to do is sadly not I/we want to do, not their fault, or ours for that matter, itās just life.
Jean
Hi markbrightburn, thank you for your reply to my reply, LOL.
No seriously that makes me so mad, Iām really grateful for people like you, campaigning on behalf of people like me and yourself of course, itās so frustrating, I havenāt the strength anymore, so thanks again,
Jean
Will do - donāt know her name or exactly where she is but my wife knows someone who knows someone who knows.
Iām also thinking that when I see the MS Nurse in a few weeks I will ask if she would be happy to ask any isolated MS people near me if they would welcome contact from me
Hi @greenhouse and @cymroglyn Just wondering if you use video linking of any sort ? Do people speak to you using any of Zoom etc
I find things like zoom really frustrating, and havenāt got the patience with it. During all the lockdowns there was a weekly pub quiz type thing that happened over zoom and all I see are dozens of people staring at the screen, I know some people get on okay with it but I just find it really dispiriting and feel bloody miserable afterwards. Itās the most antisocial form of socialising I can think of. I donāt mind talking to friends on it in a one-to-one type set up but group things do my nut in!
Hi, I donāt use zoom, I donāt really like it, but I do whatsapp video call wilh family overseas.
I use Zoom, Skype, Teams or FaceTime for one to one chats with friends and family. FaceTime (an Apple thing ) is by far the most straightforward- just call some one and if they are in they answer. Other than quick calls and chats I meet up with folk for a catch up over a cup of coffee, tea or glass of beer, wine. I find it very useful for a social chat with friends and family including some old work colleagues who are now in overseas countries.
Must admit Iāve never explored the volunteering Section of the website but will do so thank your for that.
I received an invite to a local Project Mead event to gain feedback / thoughts on how best the Society can support folk with MS - as mentioned in the volunteering āNewsā.