It’s just not as lighthearted or as much fun as the old site. I wonder if things will improve…or not…
Yes I am too. I have lost contact with a number of people who I felt I were real friends. I feels really sad about this. The format of the site is so much like some kind of commercial site I do feel it has lost a lot of that sense of community. I’m not a computer person at all and the old site welcomed my ignorance with open arms. This new site just seems to scorn me. I feel rather lost. Trudie x
hi trudie x hug x i see what you mean im gonna stay here for a while and see if things improve but for now just find a few buddies and see how that goes there are other options for us to get in touch with other msers for advice, suport and a laugh. the website i put up from ms people is one idea. lets see how things pan out but yes this site has definatly lost somthing special in the sence of friends and family . take care caz x
I’ve just put my first post on the new forum.Not sure if i like it.It’s gonna take me a while to get used to this. Fi
im trying to post on both just until i deside where im going to stay. hope your ok fi x love caz
Hi All Having just come onto this message forum, and remembering how my partner used this and also how it looked plus how easy it was to use I think she would be perplexed over the blandness and the lack of graphics and colour on this site. Her MS has got to the point of now having no speech or movement and is mostly confined to bed so she wouldn’t be able to connect. I do think this is one more thing I have come across when talking to individuals/companies who are meant to help people with MS and there families and carers. When chatting to someone from the society regarding the lack of commercials for raising awareness of MS when we seem to be getting more and more on TV asking help for cancer, dementia and alzheimer’s she really couldn’t answer my question and this all started when someone asked me how Erica was and they thought I was talking about fatigue syndrome/ME and didn’t know much about MS. it just seems to be the forgotten one.
NO!
chelsea52 wrote:
Hi All Having just come onto this message forum, and remembering how my partner used this and also how it looked plus how easy it was to use I think she would be perplexed over the blandness and the lack of graphics and colour on this site. Her MS has got to the point of now having no speech or movement and is mostly confined to bed so she wouldn’t be able to connect. I do think this is one more thing I have come across when talking to individuals/companies who are meant to help people with MS and there families and carers. When chatting to someone from the society regarding the lack of commercials for raising awareness of MS when we seem to be getting more and more on TV asking help for cancer, dementia and alzheimer’s she really couldn’t answer my question and this all started when someone asked me how Erica was and they thought I was talking about fatigue syndrome/ME and didn’t know much about MS. it just seems to be the forgotten one.
Hi Chelsea, I so agree. Surely they can’t get many donations from people who aren’t already in the MSS, as you hardly ever see any adverts for it. I remember a short campaign on buses and tubes about 4 years ago… but nothing since. What gets me is they are always writing to me for donations… and I do sometimes donate a small amount or sell raffle tickets… but then I think ‘hey wait a minute. I HAVE MS (PPMS) and am living on benefits. Why am I being asked… frequently… for donations?’ Why does every other major charity for health conditions advertise on telly and ask for donations… and not the MSS? I recently got an appeal for donation saying how the MSS had helped to fund a mobility scooter for an MSer. In the same week on here an MSer said she had applied for a grant and the MSS had lost her application. She eventually got funded through a trust fund from a former workplace. Makes you think, eh? 
Pat x
Hi PatB considering 1 in 1,000 people in the UK develop MS I think this is sad that more info about this horrible condition isn’t known. I am Erica’s partner and her carer we are trying to get a motabilty car and its going to take 200 pound from her DWP which means my carers allowance will go to pay for it which will leave me with 22 pound a month and we get asked to donate, something wrong somewhere. C x
hello pat and chelsea52 i think the recent ms campain like most have been aimed mostly at us the ms community. putting the peices together was the last advertisising campain i remeber that was in the public eye. that being said just showed happy smiling ms people and nothing at all to do with the daily struggles or why we may look well ( most of us) and not feel it. as for grants to help us , i hate going through the local branch and them dealing with an application yes people like yourself do sadly get turned down. i know that the society is funded partly by us ourselves but like other charitys is not pro active enough to getting more funding from thoses who are not msers. i see countless charity appeals on tv and through the post for breakthrough,alzimers ect but never anything for ms. i understand campains cost money but come on how much did this new website cost huh? surely those funds would be better spent on us. we live with ms and live with the stuggles ect and not all feel supported properly by there own - my society. i feel its very middle class and unless likwe someone else said a few days ago you fit into what there idea of ms is ten your stuck. im a member of my local society in cornwall but i dont go to meetings now as dont feel its geared up for anyone under 55 no offense to them or anyone above that age but it isnt somthing i need. they just seem to sit around saying there problems ect. anyway im going ion on a tangent but the society could look at ways to intergrate younger people esp in areas where there are no provisions as yet. make the grant system fairer and maybe have it applied for at a national level not local? sorry for the moan lol im passionate of trying to get the help we need and deserve and am fighting for all of you hear x love caz xxx
Hi Caz not sure how much the MSS raise through funding but In 2010/11 Cancer research UK donors showed their inspiring support by raising £433 million.
spacejacket wrote:
Hate all these silly ‘smilies’ as well. You don’t have to use them. :roll: And how do you reply to individual posts - l find l can only reply the the ‘Thread’
Use the quote button.
chelsea52 wrote:
Hi Caz not sure how much the MSS raise through funding but In 2010/11 Cancer research UK donors showed their inspiring support by raising £433 million.
amazing the cancer charity raised that and well done to them for such a great cause. i bet mss didnt raise half that they are missing great opertunitys to help all of us . i feel like we are opressed if im honest instead of being given wings to realize our gifts and potentials. people at the top should put more money into helping than into high salaries of those in the offices of mss
just googled the highest up in the mss and they are Simon Gillespie - Chief Executive Neil Spence - Director of Corporate Services Sue Farrington - Director of Information and Education Patricia Gordon - Director, MS Society Northern Ireland Patricia Mbasani - Head of Human Resources David McNiven - Director, MS Society Scotland Jacqui Penalver - Head of Chief Executive’s Office Judi Rhys - Director, MS Society Cymru/ Wales Jayne Spink - Director of Policy and Research Nicola Tallett - Director of Fundraising & Marketing Barbara Williams - Director of Operations id like to know there yearly earnings after all if we are dis satisfied with how our society is run and the out put of helping the magority with ms not the minority then like any top company surely we have a right to see where our finanacial help is going. now please dont get me wrong i know these people are running a big charitable organisation here abnd there is some good being done i know that and thank them for it. but i think public awareness esp and awareness amongst the medical profession too esp doctors ( as mine knows nothing about ms and ive seen others are the same) maybe training sessions in certain conditions for them is needed? public ignorance astounds me and others this needs tackling and people need to see adverts, campains aimed at those whodont know about ms. a campain aimed at us with ms is not entirely helpful after all we know what ms is. and may need to know more but we live with it. so come on all working for mss get together and see just how much could be achieved for us and the soc. we need more funds raised as i know we are not always running at having funds left over in a year but we could!
im guessing your right about how many are affected by this terrible thing but they put it out into the public the stigma has almost gone and so should any with ms too. im fed up with feeling that i have to hide my ms because people just dont understand or care. maybe if they lost there ignorance of it like with these conditions which are in the publicthen maybe all our lives would be easier?
same hear apart from one yawn. hope you find some soon x caz
this is so hard to find anything, why o why did they change it :evil:
In a word…YES! luv Pollx
yes
Hi, im so sorry to hear how badly affected your wife is now. Whilst I agree we could do with more funds for research into causes/cures/treatments for MS, it is my experience that MS is quite well known in the non-MS world. may I tell you about another chronically disabling desease, which is hardly known at all, and desperately needs funds for research. I am talking about HSP...Hereditary Spastic Paraparesis. After 12 yrs of being told i most likely had PPMS, a neuro said I had HSP and not MS. You can imagine how much turmoil this threw me and my family into. Anyway, I joined the support group, attended the AGM and met up with new people and have a very good pal out of the ordeal. Then this year, yet another neuro said the dx of HSP was wrong and now its back to good old PPMS! Fascinating story, isnt it? HSP has very little profile and funds to help its sufferers. Hope you didn`t mind me mentioning this, eh? luv Poll. p.s. regards to your wife.