Results 1 to 6 of 6

Thread: The un-official guide to fighting MND

  1. #1
    Forum Member MattJ's Avatar
    Join Date
    Jan 2011
    Location
    Oxfordshire
    Posts
    347

    The un-official guide to fighting MND

    HI all,

    The recent research article on maintaining weight has got me thinking about whether it would be useful to build up an un-official guide on how you can fight MND. Obviously this wouldn't be endorsed by the MNDA as its mostly unproven. Well...depending what it is!

    When my mum was diagnosed in September 2010 we all pretty much felt it was "here's the news", "here's some information" and off you go. Ok...this might be a little harsh but it certainly felt close to this at the time.

    So for people who are newly diagnosed the clock is ticking from day one and a list of useful tips might help increase quality of life and survival. Plus give family and friends something they can contribute towards to help their loved one. I know this would have been useful for me 6 months ago!

    1. Calorie intake should be increased to maintain weight as this has been proven to improve survival:

    http://alsn.mda.org/article/eat-drin...lthy-motto-als

    2. Organise some physiotherapy to help stretch muscles that have begun to waste. This will help with stiffness, cramps and improve the mobility of remaining active muscles.

    3. Keep your mind active. A number of people stories I have read who have had MND for more than 5 years seem to swear by this. Simple things such as painting, crosswords or writing a novel...just keep yourself busy (ish). Don't get too tired!

    Any others useful tips? Maybe we could then roll these up into one list and keep as a sticky post.

    Best regards,
    Matt

  2. #2
    Forum Member
    Join Date
    Jan 2011
    Location
    Northamptonshire
    Posts
    1,077
    Another tip - try to space active days throughout the week, alternating with relaxing and recovery days. If I go OTT (because I refuse to give up), I suffer the next day and have to take it easy but I think it is worth it.

  3. #3
    Forum Member MattJ's Avatar
    Join Date
    Jan 2011
    Location
    Oxfordshire
    Posts
    347
    Hi all,

    Anyone have any thoughts on taking Vitamin E? Has it been proven to slow progression? A lot of people seem to take a high daily dose of this but my mum has never been advised to do so.

    Matt

  4. #4
    Forum Member Z3 Driver's Avatar
    Join Date
    Jan 2011
    Location
    Rotherham
    Posts
    223
    hi,
    do the things you have always wanted to do, this gives you things to look forward to and keeps your mind active.
    accept help from people with the everyday stuff that you find frustrating to do, keeps you calm .

    Kevan

  5. #5
    Vane
    Guest

    Un-official guide to fighting MND

    I think an unofficial guide is a brill idea,
    vanessa

  6. #6
    Forum Member sarahezekiel's Avatar
    Join Date
    Dec 2010
    Location
    London
    Posts
    244
    I agree with all of the above. I'm adding good quality sleep. It's very important to maintain everything, especially nutrition. If you can't sleep enough you'll be too tired to eat. Happened to me last year and almost killed me.

    I used to take vitamin E and didn't see any benefit.

    Sarah

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •