News to me

[matthew55]

Someone from MND said that it's not incurable. This was on the radio just now. I think that's incredibly insensitive and damaging. 😠

[denise]

Not incurable or incurable? I'm confusing myself. Never mind.

[matthew55]

Not incurable. As is there is a cure.

[MNDConnect]

Someone from MND said that it's not incurable. This was on the radio just now. I think that's incredibly insensitive and damaging. 😠

Hi Matthew

I'm sorry that you've found the comment about MND not being incurable insensitive. Whilst there currently isn't a cure for MND, it is believed that this is mainly due to MND research being underfunded. If there was more money invested in to research then it is more likely that effective treatments and a possible cure would be found.

The MND Association has been campaigning for the Government to invest in MND research and at the weekend it was announced that they have agreed to invest £50 million in to MND research. You can read more about this on our website here https://www.mndassociation.org/get-i...ed-to-end-mnd/

Best Wishes

Rachel
MND Connect Adviser

[Onein300]

Someone from MND said that it's not incurable. This was on the radio just now. I think that's incredibly insensitive and damaging. 😠

I think Matthew, the context in which it would have been spoken was

"It's not incurable, it's underfunded"

If you leave off the latter part of the quote, you don't get the full meaning.

MND is most probably treatable/curable but not yet and because we have had so little funding and focus relatively to cancer etc.

[matthew55]

Over how many years though? I won't be around for the final payment.

[matthew55]

And as far as a cure goes it could never apply to me.

[Onein300]

But it doesn't make the statement incorrect or insensitive Matthew.

Please think of the newly diagnosed.

Lee

[LindaB]

We have to have hope of better treatments and ultimately a cure. The day must come soon when newly diagnosed people are not sent away with Riluzole only with the statement it may give you 3 months more ...and apart from that no treatment. Being told this is the disease all medical professionals dread getting (as I was told)...there has to be more on offer for treatment and cure.
Having this additional funding (or the promise of) is a huge step in the right direction.
We live in hope...without hope what is life?

[matthew55]

When I was newly diagnosed half of my voice box was dead. That's why I think a cure is a pipe dream.

[Olivia H]

I think a likely outcome may well be therapies to slow progression or even hold it at bay. There are now better treatments, although not a cure, for Parkinson's, for example. Even in the case of many cancers, there are not always cures, but therapies such as chemo, radium and endocrine.
Curing mnd, on the other hand, may emerge from stem cell treatments, or supercharging mitochondria to 'restore' redundant motor neurons. We may even reach a point when, if there is a clear cause of mnd, we may have some way of preventing it. If we look at everyone who doesn't develop mnd, what is it protecting them but not us...therein the answer lies?
As a complete aside, but observation...do people feel they deteriorate/symptoms are worse when not drinking or taking in plenty of water?

[matthew55]

I'll drink more when they come up with a bigger bag 😉😁😍🍻🍻xx

[LindaB]

Olivia I do think hydration plays a big part in physical health & I certainly know if I don't drink enough water. Makes me feel sluggish & more fatigued.
Lots of ppl think they drink enough however probably don't.
Take care 💙

[John D]

I am still mobile. My dietician advised for my weight I should be ‘drinking’ a minimum 1.4 litres of water a day and ideally 2.5 which I rarely manage even including other liquids. Would be a big problem without the PEG because I can only sip liquids.

[Ellie]

As a complete aside, but observation...do people feel they deteriorate/symptoms are worse when not drinking or taking in plenty of water?

Dehydration, even mild dehydration, affects everybody in so many ways and, if that dehydration becomes chronic, i.e., sustained, then I've no doubt it impacts on our health.

You'll see me always banging on about hydration, hydration, hydration 🙄 particularly for secretions, constipation, digestion, sleep, cramps and twitching. Water is a Wonder Drug 😏 xx