Cure or symptom relief

[GaryM]

One thing that has really surprised me with MND is that I know everyone would like a cure to be found, that is perfectly understandable, but I'm surprised how little attention relief of symptoms seems to get. Even if you accept that the disease gets worse you shouldn't have to suffer all the debilitating and distressing symptoms we all know so well. Instead we are left with trial and error treatment and asking for advice on here. It can't be that difficult to do some research on controlling saliva for example and actually find out what works instead of trying an array of medication to see what works for you, or can it?

Sorry it's a bit of a rant but I'm sat here with a hyoscine patch on and the aftertaste of atropine in my mouth wondering if either of them are doing any good. Reluctant to stop in case my mouth becomes even more awash, but also reluctant to increase the dose in case neither of them are working.

[Bowler]

Rant away Gary. I agree with you. The palliative consultant explained to us that everyones body reacts in a different way to medication. Now that might have been a bit of bull but I can’t think why he would say it if he didn’t believe it. I guess its a bit like some people are getting bad reactions from the jab but others aren’t. Thankfully we didn’t have major saliva issues but we did with leg pain. We must have tried at least 5 or more different drugs before we settled on one that reduced the issue the most.

Take care Gary

[GaryM]

Rant away Gary. I agree with you. The palliative consultant explained to us that everyones body reacts in a different way to medication. Now that might have been a bit of bull but I can’t think why he would say it if he didn’t believe it. I guess its a bit like some people are getting bad reactions from the jab but others aren’t. Thankfully we didn’t have major saliva issues but we did with leg pain. We must have tried at least 5 or more different drugs before we settled on one that reduced the issue the most.

Take care Gary

Thanks for the reply, Phil. I think you've made my point. If everyone reacts differently then why is there nobody looking into why? Maybe it'll take gene sequencing before they can predict how each of us responds to a particular drug.

[Olivia H]

Absolutely agree. I know there are multidisciplinary centres and specialised nurses in some areas, and other sources of advice...but I very much think MND becomes a DIY illness, without the same structured remedial pathways Ive seen available in the case of friends/relatives with cancer, for example. It is clearly not a rare illness at all, just one that is misconceived as such.
And a personal 'gripe'... I don't know that many other illnesses that are referred to as "disease". A friend once said it sort of puts you off asking about it! What's in a name!

[Ellie]

And a personal 'gripe'... I don't know that many other illnesses that are referred to as "disease". A friend once said it sort of puts you off asking about it! What's in a name!

One of my pet peeves also Olivia H

I sometimes say that I have amyotrophic lateral sclerosis (ALS) - doesn't contain that word 'disease', nor does it sound contagious 😟

I like this definition of ALS which I recently saw:
" ALS is a multisystem disorder involving degeneration of the pyramidal motor system and the frontal cortices."

Bit of a mouthful but hey ho... 😉

[denise]

Gosh Ellie I don't think I could remember all that but it really sounds impressive.

Disease always sounds like it's contagious.

Europe, I'm not sure about US, refer to it as ALS and not motor neuron disease. I don't know if this means they don't split into different categories. Is this why on reading up they treat all ALS with riluzol? 🤔

[Barry52]

Gosh Ellie I don't think I could remember all that but it really sounds impressive.

Disease always sounds like it's contagious.

Europe, I'm not sure about US, refer to it as ALS and not motor neuron disease. I don't know if this means they don't split into different categories. Is this why on reading up they treat all ALS with riluzol? 🤔

Hi Denise,

They do recognise sub categories of MND America as they have a PLS group but they don’t use the term motor neurone disease. Because of this most references used by the media are referred to as ALS. I know of a few PLS people in the US who don’t take riluzole.

Barry with hugs x

[Olivia H]

Absolutely agree Ellie...I refuse to have a "disease". Sounds like something out of Dickens! X

[denise]

Thanks for that Barry.

To be honest I dont think mnd sounds nice at all. Ok perhaps the name goes with the disease. We should have a competition for a better name. Something shorter than Ellie's version. 🤔