Rant

Sorry for this but the new website and it’s super secure log-in prompted this post! I care for my wife who has primary progressive MS who has now lost the use of both legs, right arm and has only limited use of the left arm. she is confined to a wheelchair and needs to be lifted for transfer. Her mouth still works fine through! My rant is on these subjects. 1. New website - Looks commercial rather than helpful - Unless it is commercial ( ie fundraising) why bother as the information seems no better just perhaps more difficult to access and surely funds could be better directed elsewhere - Maybe even a cure? 2. MS society - We haven’t had much contact with the MS society and percieve it as something of a talking shop rather than really looking at what we need - A cure! These are some of the things that put us off. a) We were put off in the early days following diagnosis from events and forums by referral by our consultant to an MS sufferer who on starting a counselling conversation with my wife admitted that she found life so awful she had attempted to commit suicide twice. b) There has only been one meeting that we found on Progressive MS (which seemed to attract a large audience) however the speaker was almost 2 hours late as he couldn’t find his way round Milton Keynes and when he arrived the talk could be summed up with the sentence “we know bugger all and the research is so slow you lot have got no hope”! We were so fizzing mad at the rudeness and lack of care that by the end of the meeting any hope of progress towards treatment evaporated c} The information on Primary progressive seems to be summed up in the above research meeting - There’s little research, no treatment and certainly no cure! - Perhaps funds would better spent on a Free Bar? 3 Carers support - What support? Where? There are of course careers around but practical help??? I attempt to work whilst caring for my wife. Where is the help for me that enables me to care for my wife, not websites with a selection on nice smilies or “have a cup of tea and a pat on the back” care but positive, financial, physical and emergency help? 4. Advice - There is one area where we really could have done with positive help and there is a real shortage of sensible, practical advice -that is on how you can equip yourself - what to buy and what to look for in the array of often overpriced junk which leaves the sufferer unfamiliar with disability unable to make the right choices and exposed to the salesman interested only in their own commission. Example - We bought our chair lift for our house when my wife was still able to stand and we didn’t appreciate how important the height of the seat was (in relation to the height of the wheelchair seat) to getting on and off easily. Only now as my wife’s condition worsens do we find out for ourselves how vital this simple information is to our ability (or inability) to get up and down stairs. My wife and I have fought MS consistently over the last 19 years since diagnosis raising a family. building a business and enjoying some super events such as Disabled skiing in California but the future looks frightening and very short of hope as the MS tightens its grip… The new website seems to put across the MS society as a nice club, (get involved, join us etc.) it says on the home page that it offers hope, sorry but I don’t see it. From a personal point of view it doesn’t show the rage and anger that we feel against this cruel condition and doesn’t show any real vision for the future.

I am doing a sponsored swim to raise funds for the MS Society in memory of my Husband but cannot find anything on the website to ask about how to get the money raised to you ?

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Hi Songbirds

you appear to have responded to a thread from about 5 years ago. If you want to raise funds for the MS society, perhaps look at the home page rather than the forum

Sonia x

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