HighCALS study

[Doug Carpenter Forum Member Find all posts View Profile Close Doug Carpenter]

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’m not sure whether I’ll be any use to them as I’m currently eating normally, but they’ve since rung me and I know they are looking for volunteers. The project manager is Daniel Beever ([email protected])

Doug

[Doug Carpenter Forum Member Find all posts View Profile Close Doug Carpenter]

Correction:

[email protected]

[Ellie Forum Member Find all posts View Profile Close Ellie]

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.

[Doug Carpenter Forum Member Find all posts View Profile Close Doug Carpenter]

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

[Ellie Forum Member Find all posts View Profile Close Ellie]

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.

[Doug Carpenter Forum Member Find all posts View Profile Close Doug Carpenter]

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

[Kayleigh Forum Member Find all posts View Profile Close Kayleigh]

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

[Ellie Forum Member Find all posts View Profile Close Ellie]

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!!