PPMS numbers by county/region?

Primary progressive MS
1

Hi there.

I’d like to start a peer support group for ppms only within the county I live in. I find that sharing locality issues (services, environment etc.) really helps build connections, far more intimate and inclusive than generic national or international (mostly American) groups.

According to chat gpt/Claude, there are between 150-225 individuals with a ppms dx within the county I live in, so a nice group of 9-12 ‘should’ be possibl e.

But do any of you know the numbers of ppms folk where you live, and whether your nhs trust shares this data?

All the best

2

I think you’ll find that MS Soc have beaten you too it. Local groups all over the UK.

From my experience, most of the “Regulars” are Prog MS anyway.

3

The one in-person group via mssoc near where I live is all women with rrms, not a wheelchair in sight.

An online/teams/zoom type group would be ideal; but ppms only should, hopefully, ensure a more 50/50 men-women split.

And I despair of the trend towards men or women only spaces for these things..

4

Hi @Clucker_Pigeon2024 It’s not only PPMS that uses wheelchairs, I’m SPMS and a full time wheelchair users, but from what you want I wouldn’t be welcome in your group if I lived near you.
Jean

1 Like
5

Hi Jean; you would be most welcome​:blush:. Maybe I should call it ‘Progressive’ ms, leave the primary bit out.

The ms peer groups I’m aware of don’t really cater for progressive ms, and skew younger (under 45) and female, hence RR dominance. They feel more like a clique where men are rare; kind of like the school gates at drop-off/pick-up 30 years ago..(Dads rarely spotted etc.):sweat_smile:

I work in the mental health sector, and we’re trying to create more inclusive mixed men ‘and’ women groups, going against a rather tired trend for single sex spaces which often have undertones of either misandry or misogyny..

1 Like
6

Well that’s good :+1: Yes I have to agree, the MS group where I live is all women, which is ok for me, but yes it’s should be both male and female.
Jean

7

Yes, by the time we get to Progressive, we’re all F***ed - it doesn’t really matter by then what route you took!

Gavin Giovannoni (Prof G) suggested Progressive MS should be renamed as “Worsening” MS as Progressive sounds too upbeat. Nice idea which didn’t gain any traction but I agree that he has a point :grinning_face:

Graeme

8

I’d be very interested in joining your group. However I live in West Yorkshire near to Leeds. uk

Thank you

Peter

9

Hi @petercoachingnorth Not far from me, I’m in Huddersfield.

10

Hi, be great if a few of us can get together in Leeds perhaps? Need to find an easy access cafe.

1 Like
11

Well @petercoachingnorth I wish you well with that, sadly my days of doing that are few and far between, SPMS has got it’s ugly hands on me and won’t let go :enraged_face: