Results 1 to 8 of 8

Thread: HighCALS study

  1. #1

    HighCALS study

    Yesterday I attended a routine MND clinic at the JR, Oxford.

    As well as the usual check-up and blood samples taken for research projects, I was given a Participant Information Sheet for the HighCALS study (https://www.sheffield.ac.uk/scharr/s.../ctru/highcals). This is a six-year programme looking at nutritional management.

    I知 not sure whether I値l be any use to them as I知 currently eating normally, but they致e since rung me and I know they are looking for volunteers. The project manager is Daniel Beever (high.cals@sheffiled.ac.uk)

    Doug

  2. #2

  3. #3
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,415
    Hi Doug,

    Are you of the impression you're not eligble to be a HighCALS participant? "Eating normally" should mean you're a prime candidate for the trial surely?

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #4
    Hi Ellie

    Initially, from the paperwork I was given I wasn't sure - simply because I have no experience of specialised nutritional needs. But after a telephone discussion with one of the research team I think I will likely be taking part.

    The study is at a very early stage and, like other things I'm involved with, one of their first tasks is to get feedback about the clarity of documents and online resources.

    We'll see. Anyway, you're right, after six years, who knows...........

    Hugs

    Doug

  5. #5
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,415
    The study runs for 6 years so researchers can track progression, if you know what I mean Doug.

    As long as they don't treat you like a Foie Gras duck/goose, it should be a good project in which to be involved.

    FWIW, I think good nutrition and hydration is vital in ALS/MND - that's why I'm always banging on about Dietitians and how this is such a hungry disease...

    Good luck.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  6. #6
    Thanks Ellie.

    I'm sure you're right about the importance of nutrition and hydration in ALS.

    At the moment I have to avoid the opposite problem. Rapidly decreasing mobility means I get far less general exercise and am in danger of putting on weight in the wrong places.

    As for hydration, well I find the 1982 clarets and 1990 Rhones are drinking very well now, along with odd bottle of Bolly....

    Tonight is a bistro supper and blind wine tasting with a dozen or so fellow wine geeks. Everybody tells me to enjoy it while I can!

    Seriously though, I will keep the forum posted if HighCALS include me.

    Hugs

    Doug

  7. #7
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Posts
    1,169
    Quote Originally Posted by Ellie View Post

    FWIW, I think good nutrition and hydration is vital in ALS/MND - that's why I'm always banging on about Dietitians and how this is such a hungry disease...

    Good luck.

    Love Ellie.
    I think you make a very valid point about Dietitians Ellie. Hopefully, the study will highlight the important role of Dietitians, so that enough funding can be provided for everyone with MND to get ongoing support from one, very quickly after their diagnosis is confirmed (or even before diagnosis has been confirmed, if the patient has been identified by their GP as being particularly underweight).

    The 6 year study looks like it should provide some very interesting and valuable data. As we know, from reading posts on this forum, it's currently a postcode lottery whether Mnd patients get ongoing support from healthcare professionals (including a Dietician). I think that 6 years is a long time to wait, if the Government isn't going to consider more funding for Dietitians before the recommendations of the study are known.

    Best wishes,
    Kayleigh
    Last edited by Kayleigh; 1st May 2019 at 18:50.

  8. #8
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,415
    Most people have ongoing access to a Dietitian at their MND Care Centre - you may need to specifically ask to see one however...

    And Dietitians are not just for those who have lost weight either, they are for everyone!!
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

Posting Permissions

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