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Thread: worried about the forum.

  1. #1
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    worried about the forum.

    Hi,
    I have real concerns about the forum. My first is about the lack of new contributors, it has dropped massively since the turn of the year?
    Secondly it seems to have become a real back patting exercise where everyones just being told how great they are. You cant tell people the truth because you get called a bully and i'm not saying telling the truth means personal attacks. All i mean is that sometimes people need to be told to wake and smell the coffee but you cant do that on here because on here nobody is in the wrong until you tell the truth.
    mik

  2. #2
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    Hi Mik
    I don't post much, I feel I'm not brave enough. I'm completely teed ( can't say the pi--ed word) off with this condition. It frightens me that almost each day it worsens and I sometimes wonder why the hell we have to put up with it. I am particularly teed off with the goody goody people of this country who think it's their duty to make us suffer even though some of us would prefer to have a choice. I'm slowly wearing my 79 year old husband out, it's not fair on him and my biggest feeling is guilt that I'm putting him through this. I am so much luckier than some who post, I have 2 very caring children who are doing their best to make things easier, but they have their jobs and families and again, I get this feeling of being someone I'm not. I am the one who's supposed to be caring for my family and grandchildren, not the other way round. There, I've blown off steam, but that is how I really feel, not brave and cheerful, but not depressed, just pissed off (there, I've said it)! Rainey

  3. #3
    Forum Member Terry's Avatar
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    Hi Rainey;

    I do agree with you, we are nothing much more than a burden for our partners, family and country. All that I could do has gone and I and my wife are left frustrated as she can not do what we both worked hard to do.

    I hate people saying, you're copping and doing so well, they so often do. I don't like to be called brave as I'm not. I didn't volunteer for this and no one would. We are forced into it.

    However some people feel better having a pat on the back. I don't know any carer/partner, that thing they are great at the forced job.

    It is important that we support each other in the best way we can, unfortunately the way some do it is not to everyone's liking but that's always the case.

    It is nice to have the input from new or infrequent posters as they often have valuable advise that we never knew or have forgotten.

    Regards Terry

  4. #4
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    Where would we all be without this forum I ask myself, answer a flipin sight worse off all of us. X
    Evil triumphs when good men stand by and do nothing.

  5. #5
    Forum Member pete's Avatar
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    Morning Mik,
    I had thought it was just me but really glad you have noticed the decline in posts regarding this damn disease and the total lack of anything being done to improve our chances of at best getting any realistic improvement with our conditions, I honestly don't know how I would feel in your shoes being so young and with a young family, I am double your age and I fume seeing so little assistance being given to what is the best kept secret condition ever.
    Almost daily we have a series of adverts about Cancer and what needs to be done for those patients, not that I think Cancer is any less important than our disease but Cancer patients have some hope and many drugs and treatments available ,so at least you have some hope however small, sadly being honest we have nothing despite all the money raised by IBC and many years of past research being done still a big fat zero in respect of treatment and only empty promises of a drug that may or may not benefit some.
    What has always amazed me is how very nice and complimentary we are about what help we get ,it's all crap ,sorry but to keep on accepting the feeble diagnosis at best of what we may have but in time will be confirmed by us either kicking the bucket or surviving past the date given, then we are told how well we are doing !!, no thanks to the medical fraternity if we do ,we just have to endure less mobility and look forward to life in our body but now it very much becomes a prison with only one way out..
    So considering the. Recent film that did get Mr Redmayne accolades for his performance , just what did it achieve in the cold light of day ? Apart from the publicity and that isn't any use to a person who gets the diagnosis of mnd today or tomorrow .
    It's been six years plus for me and I have been fortunate to meet some incredible folk, some who have sadly passed away because of one reason and whatever way you see it it is the result of nothing being done to save them ,it was tests,diagnosis, and go away and exist until you pass away.
    That I cannot understand however I try ,that in 2015 we have nothing ,not a thing, now that's really disgusting. We really do deserve much better than this both for us and for our families who save the NHS a small fortune in providing care way beyond the care they provide.
    All I need is a miracle

  6. #6
    Forum Member GrannieAnnie's Avatar
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    Pete - you said it all. I have yet to find any clinical trials that are recruiting - I have written to companies, experts in their field and the latest thing I have been told is that by law those recruited for clinical trials are not to be identified by name etc. to the people doing the trial, so I sort of shot myself in the foot being in touch with all these people and asking if I would be a suitable candidate for their trial. Only one's consultant can submit one's name or maybe the MNDA of this I am not sure. I'm told there is much beavering away to try an find something that will halt the progression but always, it is so complex. I have tried to give DNA and that has not been taken up. So as hard as one may try its not easy to find things out. My son-in-law is running in the London Marathon to raise money for the MNDA and we are hopeful of reaching our target of 4,000. He is 45 so not a youngster and has his own health problems but we are doing our bit.

    I don't post very often either as when I have there has hardly ever been a response, I know several people who feel they are interlopers on the forum so perhaps that could account for the lack of new people. I do know lots including me who read nearly every post and I do thank everyone for the invaluable information and the sharing of their experiences that has helped considerably. I am fully in favour of the forum it supports people who feel the need and allows a letting off of steam but we are all in the same boat just our timings are different but the end will always be the same. My neighbour told me he was off abroad for four years and he will see me when he gets back ................I'm not so sure. And with that happy note I wish everyone a Very Happy Easter. AnnE x

  7. #7
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    I also very rarely post anything on here but I read it almost every day. It is comforting to know I am not alone and also to benefit from advice gained by others experiences.

    I agree with much that has been said above. In my case I don't post often because I don't have anything to add as there always seems to be someone far more knowledgable than I am. Sometimes I feel the posts are either a bit harsh and sometimes a bit sugary but hey ho that is how life is.

    So everyone please keep posting as I for one would really miss you and I will join in when I can.

    Anne

  8. #8
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    Hi Mik
    I guess I am one of the missing contributors to this forum. I used to post last year and received some good information and advice, thank you everyone, but then stopped posting for a variety of reasons. Firstly because I went to some very dark places as my condition worsened and also because I joined the forum to make contact with other people with MND who were like me particularly ladies in the same age group (60) as me, but really anyone on the same journey as me, turning from someone who was very busy and useful into someone who can't even wash their own face and is entirely dependant on other people.But at that time the forum seemed full of carers, who I know do a wonderful job, but not what I was looking for. Anyway now I'm feeling much better in myself even tho physically much worse. Can't walk, right hand and arm pretty useless, and breathing much worse but don't know if it's the change in weather or my birthday coming up, but suddenly feel much more cheerful. Feel like there is something worth getting dressed for, even if it takes 2 carers 20 minutes to do it! All the time I wasn't posting I was reading the posts tho, and hope to keep posting in the future.
    Love Carole

  9. #9
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    Mik, the forum is a moveable feast, isn't it? Because of the very nature of MND, people come and go but I have noticed a number of new contributors lately although we have lost lovely people lately, like Graham and Big Steve. It is a shame that you feel you cant just write what you think. If it isn't a personal attack, I am sure we would respect your views. If it is personal, send a private message. I bear no bitterness towards anyone who posts. if I don't agree with their general attitude, I just don't read what they write! The forum is a great arena for us all. I, for one, could not do without it - and I always enjoy reading what you have to say! Much love Joycie xx

  10. #10
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    hi,
    i am worried because the forum has turned into a meeting place for the same 10-15 people, i'm not having a pop at those 10-15 people as i put myself in that group. The new blood need to join in more and more needs to be done by the MNDA to advertise the fact that they have a forum, after all it is THEIR forum. Everything they do with regards to campaigns, research and fundraising should be posted on here by the MNDA. I dont feel the MNDA have put enough effort or input into the forum. This forum really should attract at least half the people in the UK with MND plus carers or family members!
    mik

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