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Thread: Now tell me, what do you think of this?

  1. #21
    Forum Member
    Join Date
    Mar 2011
    Aylsham, Norfolk
    Hi Susie and Rob,
    Thanks for your reply. It is nice to know that we are not alone and floundering in the dark.
    I will send my e-mail address by PM

  2. #22
    Sounds like that idea could be an answer, Matt. The very nature of these threads allows diversions from the main subject and that would mean a considerable housekeeping job to keep the info together and readable, but worth doing all the same. But the potential to answer the need is there and your idea must be worth trying.Does anyone else have any other ideas to make the forum info easily available to newcomers?

  3. #23
    Robyn Copley-Hirst
    Hi Everyone,

    This thread has been really interesting. As we progress all of you here will show us what kinds of topics are interesting to you all.

    I recently set up the Research forum as there seemed to be a need for it here, I think some of the suggestions for other ways to organise and seperate the growing information here are really good.

    I'll keep an eye on this thread and repeat what's said above... if you have any ideas on categories you would like to see do let us know. I certainly think a section to discuss benefits may be helpful, but ideally I'd like you to tell me what you would find most useful, or what forum area titles you wish were here.

    I'll look forward to seeing any ideas here,


    PS. the search facility on the forum will highlight the word searched for, so you are able to scroll down to highlighted words. I think the best help for you all here, now we have started to grow the amount of helpful information on the forum, is to have a few specific forum areas.

  4. #24
    Thanks and hello, Robyn. Just to say that I'm going to attempt a starting point for thoughts about the thread structure. Here goes:

    Main Categories
    Transport, Personal Mobility, Domestic Aids, Financial Matters, Help and Advice, Medications, Good Ideas

    Sub-divisions of the main categories
    Transport might be sub-divided into wheelchairs, scooters, vehicles and adaptations to standard vehicles..
    Mobility could start with walking aids and other aids
    Domestic Aids could be listed by room of use, perhaps?
    Financial Matters would include DLA, AA, Motability and Rates Reduction
    Help and Advice: Local Authority, MNDA, Other Charities, Blue Badge scheme
    Medications might divide simply into prescribed and not prescribed - for associated symptoms, of course.
    Good Ideas: a catch-all for things not included above until there are enough to start a new category.
    Last edited by Robin142857; 5th May 2011 at 17:45. Reason: Expand categories

  5. #25
    Forum Member
    Join Date
    Dec 2010
    Hi All,

    The Age Concern and other well established sites provide a good template.

    Best wishes


  6. #26
    Forum Member Susie's Avatar
    Join Date
    Apr 2011
    Welwyn Garden City
    Hi All
    We have been putting something together for a while under categories similar to those suggested by Robin. With all the info and links and contacts, it is becoming a huge document, and is only based on our experience. Should other peoples info be added, it will be vast and how you would handle this on the website I wouldn't know, but somebody will, and then others can benefit from all our experiences coping with this condition.

  7. #27

    Brilliant! There must be so much info 'out there' like yours which would help others. Lets hope the job of sorting it for easy access isn't too great.

    Do you remember those books, common at Christmas a few years ago, which held hints and tips from skilled workers - butlers saying how to clean silver, laundresses on removing stains, gardeners on how to repel moles and the like? I wondered if something akin to that would be good for the forum. Might call it '100 tips for living with MND' and then ask everyone to describe their best tip or two and maybe (if there were too many, say) have a panel choose the best for inclusion. It might get bigger than 100 of course, but what's a nought 'tween friends? The categories from the other work on searching would be useful to classify the tips into groups.

    Perhaps this 'log' could take the place of 'good ideas' listed in #24 below.

    Any thoughts - anyone?
    Last edited by Robin142857; 8th May 2011 at 10:50.

  8. #28
    HI there, I think its a really really good idea. I seem to have quite a fast progression and although I try and keep one step ahead, I dont quite manage it and then feel in the dark about the next steps. It would be really helpful for peoples' tips on equipment as its very easy to rush into buying the wrong aids.

  9. #29
    Robyn Copley-Hirst
    Hi Everyone,

    Thanks for your feedback and requests above. In using a forum to discuss such a complicated issue as MND, which affects so many aspects of life, I don't think it would be completely possible to include every aspect here without it getting so complicated people didn't know where to start.

    I've had a look at your suggestions here and I've also had a look back at the number of threads started here on different subjects. Now we're around 5 months into starting our forum here, it's easier to see what discussion there has been.

    Essentially what you all appear to be after are areas of the forum where more specific advice can be left/discussed. I'm pretty open to chatting about what you all want and then I'll put it to the vote on the most popular forum so that we can all shape/vote on things, as not everyone will have spotted this thread yet

    You've all given me your various starting points... so here's my starting point based on the forum statistics and your helpful feedback here... Be gentle!

    Introduce Yourself
    Life with MND
    Research & Trials
    For Carers

    Equipment & Medication - All equipment and medication found useful by members
    Financial - Local Authority, DLA, Rates etc
    Mobility - Transport, personal mobility, vehicles etc
    Handy Tips - A catch all for everything else until/if it develops that a new category is required.

    Site news & announcements
    Off Topic
    Feedback & help

  10. #30
    Forum Member computatec's Avatar
    Join Date
    Dec 2010
    Welwyn Garden City, Hertfordshire
    Hi Robyn

    I think you have got it right. The forum is actually a database and the rule for searching a database is that less is better. Queries with too much information often return no results at all. If anyone has searched the genealogy databases, which are ginormous, they will know what I am taking about.

    Living with MND. There is a solution to every problem - never ever give up.

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